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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    LTT test for Borrelia (Infectolab)--sensitivity 89.4%

    For those really interested in getting their health back, write an e-mail to service at infectolab dot de . They will explain the ins and outs to you. They are very friendly, and always prepared to help, although their english is a bit onconventional. Good luck, and keep us posted...
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    LTT test for Borrelia (Infectolab)--sensitivity 89.4%

    Hi, taking this test was the best thing I ever did. I'm sick since 2003, and have suspected lyme since the very biginning. Over time, I had several elisa's, western blot's, immuno blot's, and pcr's. All of them returned negative. December 2012 I had the first ltt test in Augsburg germany, and...
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    Comparing PreXMRV-2 gag sequence diversity in laboratory and wild mice

    OK, cross reactivity, but with what? As far as I have read about antigens, they are pretty specific to the pathogen. So if there is cross reaction, doed this mean that the pathogen is "of the same family" as xmrv, or can this happen with completly different pathogens as well? Thanks for your...
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    Comparing PreXMRV-2 gag sequence diversity in laboratory and wild mice

    Hi, I just ask myself why nobody is talking about anti bodies? I was found pos for these antibodies, and as far as I know, nobody is making antibodies against a lab contaminant. I wonder what's the deal here. Do I, and those few others positive for antibodies against XMRV deserve a place in...
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    Alternative for rituximab,

    Only less expensive, no side effects, and available at your GP: LDN Check out the pdf's. Regards,
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    The Race to Retract Lombardi 2009...

    Here are a couple of quotes from the xmrv global advocacy facebook page worth thinking about: "Science magazine and John Coffin, the reviewer of paper, were aware of the use of AZA in Lombardi et al. They asked for the labels to be changed on Fig. 2C. and did not ask for AZA to be mentioned in...
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    Vivent : cocerns about friends, co-workers, family

    Hi, For those of you that don't vote because you prefer to not have the vivent message on your wall: It is perfectly possible to vote without the message from vivent apearing on your wall: Al you have to do is, when you are on the voting page with the orange "VOTE" button, right above it...
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    XMRV and CFS - the sad end of a story

    Hey Jemal, Why can't you shut those bozo's up? Her in Belgium, our Van Der Meer, prof. Van Houdenhove, is scared s*tless. Last time he wanted to make a public statement on TV there was a petition with over 5000 signatures given to the VRT, and as a result, the interview was canceled. We don't...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi, This might come as a schock, but last time I was there, he told me he had to refuse at least 2 cancer patients a day. It's not that he doesn't want to help them, but he's legaly bound. He's not an oncologist, and therfore not authorised to treat cancer patients. Also the GcMaf he(s using in...
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    XMRV research: does it matter if WPI don't do any more?

    Sasha, I second that 1000%. Come on people, this can really make a difference!!! Regards, K
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    Vote for the WPI on VIVENT giveback

    Done! Thanks.
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    Vote for the WPI on VIVENT giveback

    WPI can gain 350.000$ in this contest so please all vote. You'll need a facebook account. We're currently 4th, so we need the votes. By the way, you can vote once a day so don't forget to do it daily: http://www.vivint.com/givesbackproject/vote?region=0&view=rank Regards, K
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    XMRV symposium June 9

    Jemal, Mikovits was very positive about the Lipkin study and appeared 100% confident that she would be able to complete this study resulting in a confirmation of her original findings. The only thing that seemed to bother her is the fact that she will need untill the end of the year because of...
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    XMRV symposium June 9

    OS, Ruscetti stated in his presentation that all XMRV+ had a defect in their RNASEL which is our primary defence against virusses, hence viral infections seldom come alone ( coinfections with EBV,CMV, HHV...). So after his presentation I asked him if this defect was the cause that we got...
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    XMRV symposium June 9

    Hey OS, Good report. I was there also yesterday (I'm the one asking about the rnasel, to which we got an evasive and confusing answer) I would like to add 2 things that might be important to us: 1) Ruscetti is in the middle of analysing tissue samples for x and p's, and he said the...
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    XMRV/MRV Calendar

    Jemal, What I meant was XMRV in relation to CFS subjects. There is still Silverman in the retrovirology symposium with an xmrv topic.
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    XMRV/MRV Calendar

    Hi Bob, I managed to get a spot for this one through KDM's office. Since all XMRV related subjects where banned from the retrovirology symposium on 7 and 8 june, he took the liberty of uniting the authors of the positive studies for a seperate symposium on the 9th, at the university of...
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    XMRV symposium June 9

    Hi, I expect alot more from this one then the iime conference: http://www.hetalternatief.org/XMRV%202011%20866.htm Regards, K
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    The voting for the Chase competition begins again tommorow

    17 miljon cfs patients worldwide, and only 4000 votes. What's going wrong????
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi Rrrr, As far as I'm concerned, you can ad nastiness to the list of side effects. The first two days after an injection (when I was on the full dose), I'was ready to pick a fight over the smallest issue, and said things to my family members I would normally never say. (nasty things). So I...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi, That is correct Sushi. He told me to skip only 1 shot because of insomnia, and then resume 1/4 injections, as before. Regards, K
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    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    UK, That is correct. The nurse, Jan confirmed this yesterday. K
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi Bertiedog, In 2007 I was diagnosed with chronic Q-fever, which is an intracellular bacteria. KDM put me on azithromycine 500mg every other day, for this, which I took for 2 years and 8 months. This allowed me to stay at work. During the first 2 years my antibody titers went down slowly but...
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    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    Hi, I was with KDM yesterday, and he's coping with the same problem. All of his blood samples are sent to VIP in the US for XMRV testing, and still quite a few come back negative (serology and culture), although the cytokine, chemokine profiles give a pretty good indication of XMRV being...
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    Poll: Do You Think It Would Be Unethical for the WPI to Take Tissue Samples Now

    Hi, I voted no, but it was because I misread the question (damned brainfog!!!) What I read was : DO YOU THINK IT WOULD BE BENEFICIAL FOR THE WPI TO TAKE TISSUE SAMPLEES NOW. So ofcourse I voted YES. My mistake...:Retro frown: Regards,
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi, Sergio The nexavir price is outrages, but the fact that our health insurance doesn't cover it because it is considered as a medicine with no supporting sientific evidence to be effective for XMRV, or CFS. I have tried what you are considering (every other day) on two diffrent occasions...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Same here : no rivotril = no sleep. Before I started with GcMaf I tok 8 drops, and had a good night's sleep. Now I need at least 16, and sometimes till 35 the day after an injection. I would not worry too much about it being adictive. I went to a neurologist to interpret my brain MRI, and...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi, Since my girlfriend and me both have cfs, and we both see KDM, I think I can offer some perspective on a few of the questions just asked: Concerning WBC: KDM told us that XMRV is a lot like HIV. This means that it is not the xmrv making us sick, but the coinfections, and the way our...
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    Has anyone tried Minocycline for XMRV?

    There seems to be a few others that look promising: Paromomycin and neomycin: http://www.jbc.org/content/278/4/2723.full http://lifesci.rutgers.edu/~molbiosci/faculty/pilch.html http://www.ncbi.nlm.nih.gov/pubmed/14638394 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694137/...
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    Antiretroviral Trial

    Hi Daffodil, I still think you should look into MSM before you concider taking more chemical crap. There where several studies done on this compound, all with good results. A good place to start reading about it: http://morgellonspgpr.wordpress.com/2010/02/08/msm-more-information/ I got...