XMRV and lyme

Discussion in 'Lyme Disease Archives' started by herbqueen, Jan 26, 2010.

  1. herbqueen

    herbqueen New Member

    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
  2. herbqueen

    herbqueen New Member

    I had JUST been telling my massage therapist that I felt like I had a combination of things.. probably FMS/CFS (inherited /passed from my mother) as well as lyme and that is probably why I am hit so severely with neuro symptoms and difficult to treat! And then I see this article on lymenet!This would explain my chemical sensitivities/hyper sensitivity to herbal and pharmecutical treatment and the fact I probably do not detox/methylate well. Like many with cfs/fms I never get colds/flu's etc but tilt strongly to autoimmune side. Again- I do feel there is overlap with CFS/FMS/Gulf war and lyme, and that is probably why none of us got the bull's eye! Just like we rarely get cold/flu's (many on cfs/fms board have stated this).

    Given my dire situation right now with new frighening neuro symptoms /crash /still unable to function and misearable 7X24/can't sleep at all after my recent pharmecutical attempt--wondering if I need to go back on LDN or immunemodulator and then go back at lyme again once I stabilize.

  3. herbqueen

    herbqueen New Member

    I have always felt that anything that was good for HIV was probably good for me. That is why I went on Moducare Sterinol for many years and was stable after the "fms" extreme muscle pain. Supposedly Moducare sterinol has been used to treat HIV. I did very well on this immune modulator (not a cure-but eliminated most of my muscle pain and got me sleeping again).

    Then of course there is the LDN link to treating HIV/AIDS.......................This article would point strongly to all of taking some kind of immunemodulator such as LDN while on Lyme Treatment.
  4. victoria

    victoria New Member

    I've read this, and heard other researchers/LLMDs/interested parties discuss this...

    do you know of any LLMD or protocol that recommends LDN or have at least tried it as part of a protocol? I don't have much pain other than sinus, but have read so much about the energy. But wonder how it interacts when one herxes.

    Thanks for posting this!

  5. herbqueen

    herbqueen New Member

    Singleton talks about using LDN in his book....

    Since it helps normalize immune system -it seems like for those of us with autoimmune symptoms it would make sense to take LDN in conjuction with any lyme protocol.

    Since I'm having terrifying neuro symptoms I going back on it. Hoping it will calm down the AI symptoms and maybe get me sleeping again .

    I know I got sicker/flu like symptoms when first starting LDN before. This happens with many people. I'm guessing it is killing stuff--some people especially CFS folks seem to report that on the LDN forum.

    I've read on the internet some say they herx from lower dose abx-seems like that would be a good think to lower the amount of drugs one needs.

    Would love to know as well if any LLMDS are using it. For now I think I'm going back on it for an insurance policy for me since I'm having MS type symptoms.
  6. victoria

    victoria New Member

    Could you keep us posted as to how you do on it? What else are you doing?

    I was able to use much lower doses of abx by using the benicar, per the MP... I've been one of those who didn't have problems tolerating it. I'm not sure lower doses of any abx would help, I don't see how it could cause a herx... and if there's no herx, there's no killing of the Bb, no matter what protocol people use.

    However I have read of people keeping it subdued by doing certain things... that could be one way to at least do that and lead a semi-normal life?

    all the best,

  7. herbqueen

    herbqueen New Member

    I will keep everyone updated. I'm adding LDN back in as an MS insurance policy and hoping it might get me sleeping again. I've been housebound not driving/dizzy/sick/weak/tons of scary neuro MS symptoms now almost 2 months snce the diflucan/flagyl. Pretty much miserable 24X7. I'm doing nothing now except trying to get back sleeping so I can hopefully get back to where I was prior to December..........working with both my GP (he has no idea how sick i'm a right now-have app't at end of february to discuss some results of some further testing) and also working with naturopath/nurs pract who treates lyme with herbal/abx and has lyme herself.
    I'm wrestling with taking a LOA from my work at home job (major fortune 500 IT company where I've been employed for 26 years). This is really tough for me right now and wondering if I need to get checked out by a neurologist since my nervous system explosion/crash.

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