Topic: Columbia Lyme Study connects lyme, XMRV, CFS in support of NJ research facility
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
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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I printed out a few copies and one will be going to my LLMD....everyone can continue to learn.. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
As I support so many friends, neighbors and community members who have lyme along with other problems, I am so happy to have a place in NJ that can study root causes of:
Chronic Fatigue, Alzheimers, Autism, Chronic lyme, Multiple chemical sensitivity, Gulf war syndrome, etc....as we know the lyme is only a piece of the picture for most.
The lucky ones catch the lyme disese right away...and have no underlying problems. Most have other issues that makes their lyme disease treatment unique and need special help to treat each case successfully. It has become individualized medicine.
Also happy there is support for a place where integrative approaches are studied...and being open to having researchers collaborate by sharing their findings and working together on projects.
A myopic view has not gotten us cured so far...but put in a box. There is so much more to learn about disease and how we become ill in todays' world. From there cures will be accessable.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Personally I am a little disappointed with Columbia for jumping on the bandwagon regarding the XMRV virus. This may or may not be relevant for Lyme and tickborne disease patients.
I would much prefer them to focus their research efforts on the known tickborne coinfections such as babesia and bartonella or BLO which seem so difficult to treat and have so little relevant research.
And what about Borna Virus? Hubby tested positive for that 4 or 5 times but there is currently no lab in the U.S. that I know of which even offers a test anymore. It is my understanding that Dr K in Washington has said that he believes all tickborne patients have this virus.
I thought a big part of the Columbia research was supposed to be to identify all the known pathogens that ticks could transmit to humans?
As for the N.E.I. center in New Jersey -- maybe I missed it, but the letter above seems misleading to me. It infers that Columbia has endorsed that center and I can find no referenece to that on the Columbia cite or in the journal article?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
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Bea- I think the last few lines of the above post were copied from an email sent from P.A.N.D.O.R.A thus why the NEI center is mentioned.
I agree it is misleading to have that attached to this letter.
Lightparfait are you affiliated with that center? If so maybe you could offer some clarification.
quote:
As for the N.E.I. center in New Jersey -- maybe I missed it, but the letter above seems misleading to me. It infers that Columbia has endorsed that center and I can find no referenece to that on the Columbia cite or in the journal article?
Bea Seibert [/QB]
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks for posting this.
I can't see why it would be a problem to have more people studying all of these illnesses & see how they are related.
Many of us have had multiple diagnosis...
Especially since there seems to be no conclusive tests for what is what for many of the conditions.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Thanks for your email Sparkle...your mailbox was full so I could not reply...You are a very kind gal!
The post of mine you were referring to explaining my situation, and who I am to the ones asking, has been deleted also...
I just hit someones political hot button unknowingly...there must be more going on here than we all know about with this. Must be conflicting interests here. Interesting.
blessings, lp
Posts: 1009 | From NJ | Registered: Aug 2009
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