Topic: XMRV - Lyme - Chronic Fatigue linked in Columbia Study
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
This is a medical post. Please do not move to general again. Many of us are interested in the medical connections to our lyme!
A new paper 'Inflammation and central nervous system Lyme disease' has just been published in the journal Neurobiology of Disease authored by Dr. Brian Fallon, Director of the Columbia Lyme and Tick-Borne Diseases Research Center, Dr. David Hardesty, Lyme Center Neurologist. and fellows Elizabeth Levin and Pernilla Schweitzer.
Neurologic manifestations of Lyme disease occur in 10-15% of individuals with untreated Lyme. This paper discusses the symptoms of neurologic Lyme and reviews experimental studies that provide insight into the possible mechanisms of inflammation following Borrelia infection and contributing risk factors.
A fascinating and potentially very important study has recently come out in the journal Science. The study reports on the discovery that 68% of patients with Chronic Fatigue Syndrome (CFS) carry the XMRV virus as compared to 3.7% of those without CFS. Further work reported in the New York Times indicates that the virus has been found in 98% of patients with CFS. The discovery of this retrovirus, if confirmed by other research groups, suggests that this virus is either the cause or an important secondary factor in CFS.
This finding has implications for Lyme research as it is possible that patients who carry this virus when co-infected with Lyme go on to have persistent symptoms because: a) of activation of the latent virus; b) infection with Lyme or another tick-borne disease lowers the immune surveillance making the individual more susceptible to "catch" the virus; or c) the presence of the virus and the spirochete together act synergistically to induce an array of illness symptoms or to prevent eradication or control of either organism.
In any case, given that the symptoms of CFS are so similar to the symptoms of patients with chronic persistent Lyme symptoms, especially shared problems with fatigue and cognition, research in this area may shed important light on the mechanisms underlying the perpetuation of chronic symptoms.
In terms of treatment, if this virus is thought to be causal, then retroviral treatments that are used for treating HIV may be very helpful for patients with chronic persistent symptoms.
The featured news section found in the web site of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Medical Center article adds, confirms and enhances the efforts of P.A.N.D.O.R.A. and the Lanford Foundation that the establishment of the NEI Center in New Jersey is the RIGHT THING TO DO. ...
"The cornerstone of the NEI Center is that discoveries and advances made in any one of the neuroendocrineimmune illnesses: chronic fatigue syndrome (CFS), myalgic encephalomyelitis or encephalopathy (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic or persistent Lyme disease (CLD-PLD), Alzheimer's Disease (AD), and autism, will be applicable and beneficial to other neuroendocrineimmune illnesses, thereby bringing us closer to a cure."
Sandi Lanford, Founder/President The Lanford Foundation - Lifelyme, Inc. Tallahassee, FL www.lifelyme.orgPosts: 1009 | From NJ | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
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lp, thanks for posting. I read some of the report when it was sent to my email. But that was a brainless day and I didn't really get it.
I've seen many post lately about this XMRV and I haven't taken time until now to pay attention. I will read up and most likely have blood test done for this virus since I too test + for other viruses.
Is Labcorp & Quest able to test for XMRV?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lightparfait
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Not sure Pam...maybe you can post a new question and others can answer this.
quote: The WPI has developed a blood test for the detection of XMRV. We have an agreement with VIP Dx Lab to license the test. VIP Dx is a very qualified lab and we are confident in their ability to provide the test. More information is available by visiting their website http://www.vipdx.com WPI cannot offer individual testing and results from our research lab. Please check back here for updates.
Posts: 330 | From Colorado, USA | Registered: Nov 2008
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lightparfait
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Why is my post moved twice...first yesterday to general, and today to activism?
Posts: 1009 | From NJ | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
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I don't get the deal here. Someone please explain what XMRV is sensitive?
If this is another virus, bacteria, protoza, whatever that is making some ill and keeping them from healing from lyme & company???? Why the controversy?
We just need to know who were're playing with here. It's a big picture and so complicated.
XMRV could be another simple virus carried by healthy people but add it to our compromised immune system and whammy??
I don't care if it's the chicken or the egg who came first. Thanks nin for the inof on testing.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Here in the UK, ( population approximately 65 million,) there are a third of a million people with CFS, also called ME. Most of the people I've got to know who have ME and who have then been tested for Lyme, actually do have Lyme.
Some of my CFS/ME friends have seen how hard it is for Lyme patients to get treated and don't bother to get a Lyme diagnosis, because they know that it will be a terrible battle to find a doctor, and to get treated.
Lyme has been kept more under cover here than anywhere in Europe, so hardly anyone knows about it, there are no NHS doctors who treat it properly, and most people have paid all their medical insurance into the National Health Service, with only a few able to pay for private medicine. For all the millions of people there are only about 5 doctors in the whole country who know about Lyme, and they are private.
The news about XMRV has given CFS/ME patients some kind of hope, and I know of both Lyme and CFS/ME patients who have tested positive for XMRV at the VIP labs.
A few weeks ago, my GP had not heard of XMRV, even though the Science article came out in October 2009.
Things might change now though - here's a post from one of the charities in the UK, the ME Association, about the fact that the British Medical Journal has devoted this month's issue to the topic.
This week's edition of the British Medical Journal is concentrating on ME/CFS and XMRV.
Besides having XMRV on the front cover there are seven other items:
1 Editor's choice: 'Let's proceed with caution' by Fiona Godlee.
2 Editorial: 'Chronic fatigue syndrome and human retrovirus XMRV' by Simon Wessely and Myra McClure (p489)
3 Letter: 'More than defeatism greets patients with ME' from Stephanie Munn (p495)
4 Letter: 'Severely affected, severely neglected' from Charles Shepherd (p495)
5 Observations/Medicine and the media: Science, chronic fatigue syndrome, and ME by Cathie Sudlow (p510)
6 Research highlights: Chronic fatigue syndrome and XMRV - reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Science paper in October 2009 (p516)
7 Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points on p520)
Up until now many clinical doctors in the UK have not even heard of XMRV and only a few knew about the possible link to ME/CFS....>>
Could this retrovirus be the reason why some people with Lyme get better with just a few weeks of abx, while others struggle for years? Does it switch the immune system off in a more subtle way than HIV does, so we aren't liable to die from infections but instead we suffer longer?
Could it be an escaped laboratory mouse leukemia virus that got into the ecosystem somehow, i.e. into mice, and then into ticks which fed on mice?
Who knows, but the fact that it's a retrovirus and is associated with some types of prostate cancer, and has been found in healthy blood donations in Japan, shows that it isn't just in the US, even though the UK scientists couldn't find it.
Several UK CFS/ME patients have sent their blood to the VIP labs and had positive results, so whatever it is, it's here in Britain too.
best wishes, Andromeda
Posts: 180 | From UK | Registered: Nov 2005
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lightparfait
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Member # 22022
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Alana, I was told by the moderators not to post this in medical, and they moved it here.
I was told that those in charge are opposed to studying lyme along with these other issues and want to keep lyme research and lyme funding seperate from these other conditions.
More info for those interested and effected by other conditions with lyme can be found at www.neicenter.com where there is a new research center devoted to studying the links.
Posts: 1009 | From NJ | Registered: Aug 2009
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Some resources have stated that a retrovirus can infect all vertebrates. Sounds possibly like another co-infection of a tick bite. CFS has no known cause and the same symptoms as lyme and it's co-infections. Perhaps this virus will show CFS as lyme if they both test positive for the XMRV. So many people have stated that they were misdiagnosed with CFS or similiar illnesses but had lyme. I have never heard of anyone stating that they were misdiagnosed with lyme or any co-infections but really had CFS.
-------------------- Turtle 1653 Posts: 57 | From East Brunswick | Registered: Oct 2006
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