As we've seen recently it's good changes that the syndrome ME and XMRV is connected.
Maybe XMRV is an enabler for other diseases, specifically Lyme. Most of those I know who have Lyme have previously gone to a doc. Doc couldn't find out what's wrong. Doc gives a diagnose based on symtpoms. Most have got the ME/CFS diagnose. Those who have predominant muscoskeletal symtpoms, and have Lyme, very often get a FMS diagnose first.
Anyway, enough about that. When they find the XMRV in >95% of those with the syndrome diagnose (see source below), then it's high changes that many of those who are diagnosed with chronic Lyme has it too.
But - IF - it is an enabler, how could it be treated?
Could it be that the XMRV makes the CD57 go really low (just like HIV and CD4)? And Lyme gives the XMRV more room, and the XMRV gives the Lyme more room. (link). And maybe camouflages the immune response to Lyme (if it's HIV-like)
Here's a Q&A with the author of the study:
Question (4/4): Are there effective treatment options on the horizon?
Judy Mikovits: Because we have so many FDA approved antiretrovirals particularly non nucleoside RT inhibitors and integrase inhibitors as well as non steroidal antinflammatories. We see great promise of combination therapeutic strategies very quickly.
If an individual gets the immune system modulated to control and silence the virus the one can be well .The goal is to keep the virus quiet and the homeostasis as with the elite controllers of HIV. There are two GRE sites in the CIA acting elements of the virus. These respond to hormones and cortisol. By definition every positive patient is an AIDS patient
*****End of Q&A******
I have to say that I am skeptic to cortisol, but the other treatments looks interesting.
Does anyone know of other treatment methods for retroviruses, or which of those mentioned in the HAART article which is the best in terms of risk/possible benefit ratio?
I am not suggesting that all who have Lyme have XMRV. I don't think so. I think many, probably the majority has it. But that's just my thoughts about it. I am neither saying it has to be the cause directly or indirectly to disease. What I'd like is a discussion on how it could be treated.
And if anyone has any info on how one could be tested, then please PM me.
Posts: 275 | From Home | Registered: May 2007
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Professor Kenny de Meirleir has tested his ME patietns for viruses and markers for retrovirus (I think, according to their test results they post on forums) and treats with antivirals and antibiotics and the patients get significantly better within on e year--according to all the blogs.
The lab in europe he uses is redlabs.
by the wa, he also tests for lyme and those get better too on the treatment. He says there is no such thing as ME /cfs, it is other things, infections, aids light, it is immune dysfunction because of infection I think.
(he comes to a clinic close to here often so there are already mane patients treated by him here, and several blogs)
Over at a xmrv forum (aboutmecfs) they also mentioned how Augmentin coild help, by lowering cytokines and they think things that calm down the retrovirus should help, and that includes antibiotics
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Biggest problem I see you will never get this crap out of you - same as with HIV. "controlling" it forever
Posts: 856 | From MA | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
There are some mathematically calculated frequencies for use with a Rife device for XMRV.
I do not know if they work, but I have used them twice on myself. I do not know if I have XMRV to begin with.
This is about the only option that I am aware of.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
There is an antiretroviral pending approval for HIV that works really differently from the HAART drugs. It's called KP-1461 and what it does is cause the virus to mutate itself out of existence.
It seems to be lower toxicity than the other drugs in the trials, plus it wouldn't have to be taken for life. I think something like that would be good, though I wrote the drug company and they didn't seem that interested in XMRV.
Low dose naltrexone seems to help with the side effects from HAART and some claim it has efficacy on its own against HIV, but the reports I have read in ME/CFS seem pretty mixed.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: Professor Kenny de Meirleir
From what I could find, Professor Kenny de Meirleir doesn't see it as a retrovirus...
"In recent years, and in collaboration with a microbiologist, Dr Henry Butt, and his team at the University of Melbourne, Prof De Meirleir has focused on bacteria in the gastro-intestinal tract. "This is an obvious place to start since 80 per cent of immune system cells are located here," he says.
A healthy, functioning gut is colonised by "good" bacteria that aid digestion and contribute to our wellbeing. Many ME patients suffer from multiple intestinal symptoms, and Prof De Meirleir believes that an overgrowth of "bad" bacteria, including enterococci, streptococci and prevotella, is to blame.
These bacteria are normally present in very small quantities in a healthy gut, but can initiate a sequence of events leading to the multifarious symptoms of ME if they proliferate. (This research will be published in the journal In Vivo, in July).
These "bad" bacteria produce hydrogen sulphide (H2S) - a gas naturally occur ring in the body, where it has several functions - in minute quantities. How ever, in larger quantities, it is a poisonous gas that suppresses the immune system, and damages the nervous system, according to Prof De Meirleir.
(Hy�drogen sulphide is produced by some animals in preparation for hiber nation because it "shuts down" the body which, in effect, is what occurs in ME.) In addition, Prof De Meirleir described how he believes the gas reacts with metals, including mercury, introduced in minute amounts as contami nants in food.
The form of mercury produced after reacting with hydrogen sulphide also disrupts the normal production of energy (known as the Krebs Cycle) by individual cells, and this, he says, would explain the energy shortfall experienced by ME patients."
----
I think it will just take time to pan out as to how to treat this. Everyone is excited about this but some people are fearful. I think it will just take some time before we can see what works & what doesn't.
I haven't studied anti-retro-virals but they seem to have some pretty scary side effects. I don't think anyone wants to be on some drug for the rest of their life. We'll just have to see what happens with all of this.
PS - Interesting about the Rife. Do any people use it for viral illnesses or AIDS/HIV? I read that Hulda Clark said that zapping couldn't cure AIDS...
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Rivendell
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Member # 19922
posted
Well, from the herbal perspective, I know that Cat's Claw is supposed to help HIV/AID's and LYME, Olive Leaf works for both, Wormwood (the annua species) is supposed to help HIV/Aid's and also seems to help Lyme.
I'm trying to concentrate of herbs that help both. I don't know about a cure, but maybe taking these and other herbs with a strong enough dosage and for a year or more MIGHT change our health for the better.
What I love about herbs is that they can address different health issues instead of just one thing such as bacteria. And the bacteria/virus, etc. doesn't develop as much resistance as it does with medication. Also, there aren't as many side effects.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Is it really true that Olive leaf kills lyme? I must admit I never heard that?
thanks, JL
Posts: 268 | From new york city | Registered: May 2008
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
It is a broad spectrum anti-microbial. People who have used it in high doses say this. It is mentioned as one of the top 10 alternative treatments for lyme in the one of the books on Lyme Disease. Sorry, I don't remember the name of the book.
Posts: 1358 | From Midwest | Registered: Apr 2009
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When viruses were first introduced as a possible "component" to the Lyme complex, some research showed that in some cases Lyme itself would cause viral titers (such as those for EBV) to react as positive, and that EBV would cause certain Lyme bands on the Western Blot to show as positive, if I recall correctly.
I'm still trying to get ahold of the individuals behind these studies, but I think its important that research be done to ensure the minimal amount of cross reaction is occurring. That is to say, a positive XMRV test is positive because of the presence of XMRV, not because of Lyme or another pathogen reacting to the assay. Unfortunately until we have comprehensive investigation of the entire grab-bag of infections that are often present in people who are diagnosed with CFS/ME/FM etc, I worry that some may be taken the wrong direction.
If anyone has links to the abstract or complete experiment reports regarding the recent XMRV "breakthrough" I'd appreciate them. I've been a bit out of commission recently, so I apologize for not going into further depth this evening.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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Published Online October 8, 2009 Science DOI: 10.1126/science.1179052 Science Express Index
Reports Submitted on July 14, 2009 Accepted on August 31, 2009
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Vincent C. Lombardi 1, Francis W. Ruscetti 2, Jaydip Das Gupta 3, Max A. Pfost 1, Kathryn S. Hagen 1, Daniel L. Peterson 1, Sandra K. Ruscetti 4, Rachel K. Bagni 5, Cari Petrow-Sadowski 6, Bert Gold 2, Michael Dean 2, Robert H. Silverman 3, Judy A. Mikovits 1* 1 Whittemore Peterson Institute, Reno, NV 89557, USA. 2 Laboratory of Experimental Immunology, National Cancer Institute-Frederick, Frederick, MD 21701, USA. 3 Department of Cancer Biology, The Lerner Research Institute, The Cleveland Clinic Foundation, Cleveland, OH 44106, USA. 4 Laboratory of Cancer Prevention, National Cancer Institute-Frederick, Frederick, MD 21701, USA. 5 Advanced Technology Program, National Cancer Institute-Frederick, Frederick, MD 21701, USA. 6 Basic Research Program, Scientific Applications International Corporation, National Cancer Institute-Frederick, Frederick, MD 21701, USA.
* To whom correspondence should be addressed. Judy A. Mikovits , E-mail: [email protected]
These authors contributed equally to this work.
Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), in 68 of 101 patients (67%) compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines following exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.
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