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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    Aberrant Type 1 IFN Pathyway Response to Viral Infection in Chronic Fatigue Syndrome.

    I'm also xmrv+ and cmv-neg. Energetically I do react to CMV, though, so presumably I do have it even though it doesn't show up in blood tests.
  2. S

    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Very welcome, Wayne. Lyme treatment is not an easy road, but most CFS isn't either. Hope you find a good LLMD and make progress soon in your recovery! Sunny
  3. S

    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    I'm diagnosed with CFS, Lyme and tested positive for XMRV (my Lyme doctor is the one who wanted me to get tested). Treating chronic Lyme disease involves a LOT more than just being on antibiotics for years (oral, IM shots, and/or IV). A good Lyme literate MD will treat for bacteria (besides...
  4. S

    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Regardless of whether or not Dr. Burrascano is controversial we need him deeply involved in this to help sort out how XMRV is involved in chronic Lyme disease. As others have pointed out in other ways, there really are no mainstream doctors who know anything about Lyme disease (especially...
  5. S

    News from WPI symposium: Name change to be proposed for XMRV

    I think you're right on spot with that, Rrrr. I'm pretty sure that Dr. Mikovits said at some point that chronic Lyme disease could be explained by XMRV, that XMRV may be why some people who get the Lyme bacteria get chronic Lyme while others don't. I can't say where I saw this (Lyme brain...
  6. S

    News from WPI symposium: Name change to be proposed for XMRV

    In Dr. B's 2008 treatment guidelines he says not to exercise until you are well into the recovery stage of chronic Lyme disease treatment. Perhaps the same could be said for CFS recovery?
  7. S

    XMRV, do you have both CFS and another autoimmune disease?

    I am XMRV+ and I have not been officially diagnosed with endo but told that I was more than likely developing it a few years back. A GYN specialist who treats infertility with antibiotics (and quite successfully, too) says that endo can be cured by a LAP removing all the tissue and IV...
  8. S

    Is XMRV Causing finger print problems in CFS?

    They were unable to get my fingerprints on the fingerprint scanner at the DMV 4 years ago. It was definitely hard to see the swirls as they were very faint at the time. Couldn't see some of the swirls anymore. I'd heard that the missing fingerprints things was common in Lyme patients...
  9. S

    FDA/NIH Paper will be published

    If the NIH/FDA paper was asked to perform additional experiements, would they have had time to do that already or in the time before the paper is now supposed to be published? Don't experiements usually take longer? Sunny
  10. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    The blog also says that the CDC found no XMRV in any of the blood they tested, including the known positive control samples. D-U-H!!! Well, that's what we figured, right? So, now they're scrambling to not look like idiots?
  11. S

    symptoms question for people who are XMRV positive

    I have had mild symptoms off and on since I was about 9 or 10 years old, but nothing severe enough to really interfer with my life. After getting pregnant the first time over 10 years ago I got much more sick. Fatigue and PEM were my biggest issues, but I was able to keep working. After very...
  12. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    I received a measles vaccine as a baby/kid that was found to be ineffective, so I was re-vaccinated (sweet liquid squirt into my mouth) when I was about 8-10 years old (I'll have to check with my mom to see if she remembers exactly). I started showing CFS symptoms around age 9 or 10. But, I...
  13. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Please, people need to keep in mind that stress on the body doens't mean only emotional stress. An infection is a physical stress to the body which raises cortisol levels just as emotional stress does. So, children may not have any emtional stress causing elevated cortisol levels, but the...
  14. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    You're completely missing the point that this virus you got out of the blue would cause your cortisol to go high. As I said, it's not only emotional stresses that cause cortisol to go high but also physical stresses such as an infection. I'm not arguing about hypothetical high cortisol...
  15. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    You have to keep in mind that stress doesn't mean just feeling emotional stress. Stresses on the body include physical stresses, such as an infection or chemical/mold exposure, among other things. I do not have an acute onset CFS, where I got sick and then never recovered. I had work-related...
  16. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    My entire life, any time I was stressed I had CFS symptoms flare up. Once the stress passed I would recover my health to my pre-stress levels. But I was never even close to being diagnosable as having CFS until I had undergone intense stress for a prolonged period of time. During that time I...
  17. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Perhaps their new PR firm is already getting things in shape. :Retro biggrin:
  18. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Someone brain foggy could easily do something without thinking it through or checking with anyone first.
  19. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    I don't see any reason that WPI would have to leak this info out on FB. Would WPI be the only people who knew about it so they had to link to it on Annette's FB page to get the word out? I can't imagine that it wouldn't have shown up eventually if not today on web searches and alerts. So...
  20. S

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Any chance this "leak" was leaked on purpose to soften the blow to the public, break them in, so to speak? Sunny
  21. S

    Lyme Disease and XMRV

    I also tested positive for Lyme through Igenex and positive for XMRV through VIP Dx. I have two very excellent Lyme doctors who work together on a lot of patients and they both say they expect to see their patients start to really turn the corner and greatly improve by 1 year of treatment...
  22. S

    Funny yet serious!

    Oh yes, I think about these things as well. The worst is when I've cut myself while making dinner for my family. XMRV gives a who new outlook on cutting yourself with a knife in the kitchen! I do try to not expose my my kids to any of my saliva. From not sharing utelnsils to turning my...
  23. S

    Of the XMRV + members and guest - What other viruses, bacteria also tested +

    Not sure why no one has replied to this thread yet, but I'll post a reply. XMRV + and also high titers for EBV and HHV-6. Via ART testing I've also got CMV and Borna virus. Actually, I have all the viruses that my ART doc tests for, including tick encephalopathy. As for bacteria, regular...
  24. S

    We need a LIST OF TREATMENT OPTIONS to send to Judy Mikovits

    Lauricidin (www.lauricidin.com -- I've had 3 doctors tell me that they think Lauricidin should hit XMRV) Betulinic acid -- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC90240/ It has anti-cancer properties as well as anti-HIV properties. My doctor has me on this kind of betulinic acid, again...
  25. S

    Has Anyone Else Had Trouble Getting VIP DX Results from Their Doctor? 5 People So Far

    I have a great LLMD who totally gets the meaning of the WPI study. He had me do the VIP Dx test in early December. I received my results at my appointment in late January (I didn't try to get my results earlier). My results were dated by my doctor's office as having been received in early...
  26. S

    Do you have crimson crescents?

    I've got the crescents and XMRV. For years I used to peer down my throat trying to figure out if I had them or not, then my doc who I started seeing 1.5 years ago casually mentioned that I always have them when he looks, and poof! Magically I could see exactly what he was seeing. I'm curious...
  27. S

    Lyme Disease and XMRV

    One of my Lyme doctors told me that about 50% of his Lyme patients are testing positive for XMRV via VIP Dx lab. This particular doc's patients are typically the ones that even docs who help patients that no one else can help have failed to help. The very difficult cases. Don't know if this...
  28. S

    Anyone here with POTS who is also XMRV positive?

    So, that's what I gathered from reading on the internet, that POTS and NMH were types of OI. So, when I do the survey I'll be adding one to each of those choices. Sunny
  29. S

    Anyone here with POTS who is also XMRV positive?

    Very cool, Kim!!! I still have to take the survey so that'll increase a bit. Survey question: Does it provide definitions for POTS, NMH, and OI? And if not, what are the definitions? I've been looking on the internet but find various terms used for similar things. Thanks, Sunny
  30. S

    Anyone here with POTS who is also XMRV positive?

    Spindrift, I'm sure you know this but I'll write it for the benefit of others who may be interested. Lyme runs in families as it can be sexually transmitted and also passed from mother to baby before birth. Testing negative for Lyme does not in any way rule it out. Just like XMRV is...