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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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    Trying to get in to see Dr. Klimas (INIM) - need help from her patients

    What is the best phone number to use in trying to get an appt with Dr. Vera? If I call the main number for new patients which is 954-262-2850 and hit x2 for new patients I just get a message machine. If I choose x1 for old patients I just get a message and/or get disconnected.
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    Natural Killer Cell Deficiency anyone?

    NK cell testing, any lab? Hi, does anyone know if it matters what lab does the NK cell testing? Or is it a very routine test that can be done anywhere?
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    New Tick-Borne Disease Discovered with recurring fevers

    What do you mean ggingues? Do you mean the link to the article itself? Or the link to CFS? Some CFS cases involve a recurring fever and this version of lyme also involves a recurring fever. So it's possible that a segement of CFS cases will turn out to be this new type of lyme disease.
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    New Tick-Borne Disease Discovered with recurring fevers

    Will this explain perhaps some of the CFS cases with relapsing fevers? NEW YORK TIMES September 19, 2011 New Tick-Borne Disease Is Discovered By DONALD G. McNEIL Jr. A new tick-borne disease that may be stealthily infecting some Americans has been discovered by Yale researchers working...
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    Breast Cancer & XMRV

    Thanks Alex, that's helpful info. Who is the BWG?
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    Breast Cancer & XMRV

    I am curious why nothing has yet been published about XMRV and breast cancer. It seems like the Cleveland Clinic would have been investigating this given their original finding of XMRV in the first place and prostate cancer. Does anyone know why nothing has appeared in print yet?
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    Strongyloides / positive test! Ivermectin??????

    For those of you who tried Ivermectin and didn't find it helped much did you get a second dose a couple of weeks later? Apparently it has to have two separate treatments and sometimes more. And if the Strongyloides has spread beyond the gut it may not be treatable without more intense iv...
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    Strongyloides / positive test! Ivermectin??????

    Leitwolf: It was an antibody ELIZA test.....I am astonished how many infectious disease docs never tested me for strongyloides when it is one of the most common parasites outside the US and in some parts of the US.....what is wrong with them??? It should be a standard suspicion with an easy...
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    Med Alert & Lifeline options & costs

    Hi everyone: For those of us with very severe CFDS &/or secondary conditions that are unsafe I wondered what the best and least expensive and most comfortable wearable MedAlert or Lifeline situation is? In my case I've lost more than half my spine density and one fall and I am smithereens, so...
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    Strongyloides / positive test! Ivermectin??????

    Thanks Jenny & Clive: Had you both tested positive for Strongyloides first? Did the antibodies go down after the treatment? Did you have symptoms from the Storngyloides? Clive did you get better? ~Fern
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    Strongyloides / positive test! Ivermectin??????

    Thanks for your thoughts Marge. I have no idea, but maybe. The eosinophils combat the parasite usually and are sometimes high, mine aren't maybe that's because of the retrovirus in the white blood cells—which includes eosinophils....it's a quick treatment, just two days...but may make me sick...
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    Strongyloides / positive test! Ivermectin??????

    I just tested positive, unexpectedly for Strongloides, a parasite that one can have for decades. The treatment is Ivermectin, which can impact the central nervous system. Does anyone have experience with this drug? Has anyone else tested positive for this parasite? The IVERMECTIN treatment...
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    Felsenstein in Boston

    Thanks ggingues. Anyone else out there wanting a sooner Felsenstein/Boston new patient appt?
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    Dr. Meirleir Stomach Bacteria Overgrowth Test

    I'd love to get this testing done! Does anyone know if there is a U.S. equivalent to RedLabs???? ~Fern
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    Felsenstein in Boston

    Is anyone else going to see Dr Felsenstein in Boston for a new patient appt? I have an early Sept. appt and need to swap with someone who has a later Sept or Oct appt. So this is a good deal! It means someone could get in sooner. But it has to be someone who has not yet seen Felsenstein. Please...
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    Anyone else breathless after cold/flu viruses?

    The problem I have is that anything that gets into my lungs, bacterial infection, congestion, toxic exposure....can take many weeks before my lungs can get the stuff back out. Just as with dysautonoima circulation is sluggish, so is the ability of my lungs to expel anything. Lungs are smooth...
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    Suspense. Any news on WHEN the NIH/FDA study might come out?

    Anyone know anything more about FDA/NIH paper timing? Tomorrow is a Tuesday.......the first in August...PNAS comes out on Monday nights.....
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    Suspense. Any news on WHEN the NIH/FDA study might come out?

    I know that threads meander and take off in various directions....but this is just to say there are already a number of threads discussing what will be "in" the paper and if it will be changed and speculations about content.... I started this thread only to ask iif anyone knows anything about...
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    Suspense. Any news on WHEN the NIH/FDA study might come out?

    Does anyone have word as to when the NIH/FDA study might actually finally appear? The silence seems so silent right now...given the original leak, and then the info that the paper would come out, it seems funny to have it now all quiet with no information... ?
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    Upcoming Cleveland Clinic XMRV study

    Well, I imagine that the Cleveland Clinic knows the most regarding XMRV and prostate cancer at this point, but I sensed that the role of XMRV in chronic fatigue syndrome is not at all considered clear in the Cleveland Clinic Rheumatology Department. I only saw one of the three Rheumatologists...
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    Upcoming Cleveland Clinic XMRV study

    I've just returned home from a trip to the Cleveland Clinic. Though I went to see my mitochondrial doctor I called ahead to ask if there were now any CFS doctors at CC, given that XMRV was discovered at CC. I was given three names of doctors in the Rheumatology department and had an appointment...
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    XMRV comment on frenzy in SCIENCE

    Does anyone have access to this comment? Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights. Enserink M. Science. 2010 Jul 2;329(5987):18-19. No abstract available. PMID: 20595585 [PubMed - as supplied by publisher] Related citations
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    How can I contact Hillary Johnson?

    I wrote to her via her "letters" link on her website and she wrote back. So I am all set! Thanks everyone. ~Fern
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    How can I contact Hillary Johnson?

    Thanks Muffin! That's just what I did. She's probably deluged right now though!
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    How can I contact Hillary Johnson?

    If anyone knows how to contact Hillary Johnson, mailing address best, e-mail good too, please PM me. I need to get something sent to her regarding CFS. Please only PM me so her contact info isn't public. Many thanks.
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    Small molecule that inhibits androgen receptor could treat prostate cancer

    Rosemary: Maybe you should send this to WPI???? Or post it to their site? ~Fern
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    XMRVChronic Fatigue Syndrome and the Blood Supply - Teleconference June 11th

    I thought this talk was going to be available to us to listen to. Does anyone know? Was it not open to the public or on the internet?
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    Tulsi TeaSacred Basil/BE CAREFUL OF IT!!!!

    Hip, oh that's very interesting! The gut is part of the autonomic system so it makes sense it might come to a halt along with relaxing all smooth muscles, which is not a good thing in dysautonomia.
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    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    Does anyone know if VIP is doing testing this month? Since there is no information on their website for ordering tests or giving pricing I wonder if they are even active right now? I'd like to get tested at this point ASAP. Even though I am in the WPI study, I think it may take months to hear...