I recently received an email from a person named Mike who asked me to review his XMRV test results. I thought it would be helpful to everyone to create this new XMRV forum so that we could share XMRV treatment experiences.

Here is my response to Mike:

Hi Mike. Thanks for sending the results. I will need to see a range of results from a number of people to get a sense of interpreting them better (e.g., is there a range of positive and negative results?).

At this point there is no recognized treatment for XMRV, but many treatments that are effective for retroviruses in general that hopefully will be tested (by individuals who will give feedback on the Internet in the coming year and in treatment studies in the next few years). I would at least wait for the first wave of clinical experience to be reported on before attempting anti-retroviral therapy.

In the interim, I would consider general antiviral therapies such as:

1. Gmma globulin 2 cc im weekly for 6 weeks (called Gammar)

2. Antiviral IVs with high dose vitamin C and thymus and licorice extracts

3. Immune stimulating herbals and supplements

These have been very helpful at the Fibromyalgia and Fatigue Centers, and have historically been very helpful in CFS patients. For more on viral infection treatment in CFS, see my article “Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure.” at http://www.endfatigue.com/health_articles_f-n/Infections-treating_hidden_viral_infections_cfs.html

We will be keeping a close eye on people's experience (patient's, clinicians and researchers) with different antiviral regimens for XMRV over the coming year, and will be encouraging people to send us their experience on this Discussion Board. We will report on this in our newsletter as we hear from you.

Meanwhile, please keep us informed of your experience with treatment!

Love and Blessings,

Dr. T

Which labs have a test for XMRV? Labcore, Quest?
Is it a specialized lab?

I asked Dr. David Bell about treatment theories and as of a 11/09 it was too early to even guess.

TESTING FOR XMRV VIRUS

Information on doing the blood tests can be found at www.vipdx.com/press (order the XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND).

The cost is $650, and the profits from the test will help support the Whittemore Peterson Institute (WPI)—which sponsored the XMRV study and is playing an outstanding role in CFS advocacy.

The testing will not immediately effect most people’s treatment and it is not clear if insurance will cover it yet, so it is OK for those who can’t afford the testing to wait (you will benefit by others moving the whole field forward). For those who have doctors, insurance companies, or family that are skeptical about their illness, this offers another reason to do testing. Do BOTH tests in the panel though, as one test being negative does not mean the infection is not there. You don't need the grief of a "false negative" test.

A negative panel does not mean you don't have the illness--so don't panic if your test is negative. We'll discuss test interpretation over time as we have more experience with the results

I have had Chronic Fatigue Syndrome for 10 years. I have had excellent results with Monolaurin 300mg made by Ecological Formulas or Ancient Formulas. It is an ester of Lauric Acid from coconut therefore it's all natural with no side effects. It works by dissolving virus membranes, thereby deactivating them. (It also acts on bacteria) I take 6 the first day, 4 the next and 2 the 3rd day. By 2nd day I am usually symptom-free. I hope this helps you.

Hello,
Just thought I'd jump in. I have FMS and have suffered from horrible recurring cold sore type infections in my face. For the last 2 years I have been taking Valtrex. I take 2 caplets twice a day and as the virus begins to heal, I cut back to my maintenance dose of 1/day. I have noticed that as a side benefit, my pain symptoms are less severe.

I've had CFS since I was in high school, so it's been about 20 years for me. Fibromyalgia was triggered after I was rear ended, and then kept getting rear ended 5 times total. I have tried and read everything to get better. The information and treatment I received at the FFC center in Portland has been extremely helpful. However, I only made real progress after I added coconut oil to my program. It is an antifungal and strong antiviral! Research is being done with coconut oil and the HIV virus - it is showing large reductions in viral loads. If this XMRV virus is similar to HIV, then no wonder the coconut oil has helped my fibromyalgia and fatigue so much! I sleep well now, only need 8.5 hours a night, my pain has improved and my energy is much better. I have much more of a life now!

Coconut oil is inexpensive, has no side effects (maybe loose stools, which is good for me, since I tend to go the other way) and also helps balance hormones and regulate weight. Please do some research on the benefits of coconut oil!

A virologist informed me that XMRV is lipid coated. Lipid means fat or oil. Dissolving this coating is essential to "digesting" the virus.

"Like dissolves like", so Lauricidin (coconut ester) and coconut oil make logical sense. BHT is a powerful, synthetic antioxidant. It preserves food oils very well.

Clinical studies will be needed to find out what works best.

Perhaps I misread this topic and if I did, I apologize. But please tell me: what in the States are treatments for XMRV at the moment? Of course considering that the patient is tested positive on XMRV.

Here in Holland the only information about XMRV (yep, Nijmegen is a Dutch town) is about a study that DIDN'T find XMRV in the blood sample that came from the WPI. It becomes rather a strange story, with researchers constantly fighting eachother, instead of working together on the same issue. Which would probably far more helpful for CFS-sufferers. Therefor it isn't very clear to me, what happens if a patient turns out to have this virus. I can find a lot information on the internet, but what are your opinions?

Thanks for anything you can tell me. Bye!

But the resaerchers used an unvalid testing method. The Whitmore institution were send a couple of their samples and with their testing methods they did find XMRV. And although the researchers knew this, they went ahead and published their findings. Just criminal if you ask me!!
The researchers also used very loose criteria to see who qualifies as a cfs sufferer ,so one must also wonder how many really had cfs.
But that aside it is just unbelievable that they went ahead and published afterbthey knew other scientist did find XMRV in their samples.