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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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Search results

  1. N

    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    Well, now I’m really discouraged seeing that Aetna won’t pay for most of the tests and treatments, including antivirals. It specifically says viruses have not been shown be the cause. Although it was originally thought that CFS was related to a viral etiology, more recent studies have failed to...
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    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    The other thing is that Kaufman and Chheda have been able to identify and treat some of the comordbid/misdiagnosed issues, like Mast Cell Activation Syndrome, and if (some of?) what I have is treatable, I'd like to know and get it taken care of.
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    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    Thanks, Wishful. My integrative doc started as an ENT, and you're right, he does see all the chronic illnesses as one disease. I like that Chheda and Kaufman have backgrounds in infectious diseases given Prusty's research that viruses can reactivate and cause mito fragmentation.
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    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    Thanks, Jim, this is helpful. I do think I need to detox (necessary but not sufficient) but want someone who is more expert than my current doctor to tell me when (relative to other treatments) that should be done.
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    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    Here's a new article that includes a summary of Prusty's work https://www.neurologyadvisor.com/topics/general-neurology/chronic-fatigue-syndrome-viruses-and-the-innate-immune-system/
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    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    [I was trying to quote Wabi-sabi's answer above but don't know how to do that.] Dr. Prusty's work is leadings me to want to consider trying antivirals. I wonder if Chheda would prescribe them.
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    Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

    Hi all, After giving up on CFS research and treatment for 10 years (I am 54 and have had it since my teen years), I am back to seeing if I can get anywhere with it. I was planning on seeing Dr. Chheda but heard of an integrative medicine doctor who treats ME/CFS and so decided to try him first...
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    Getting Zika virus

    Any thoughts on a CFS patient getting the Zika virus? They have now connected Zika to ADEM auto-immune condition (as well as Guillain-Barré syndrome) in adults...
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    % chance children of CFS parents get CFS

    One of our members said in another thread that taniaaust1, do you remember where you saw this or who the doc was? Can anyone else point me in the direction of information regarding how likely our children are to get CFS? (My sister has it, too, so I'm inclined to believe it runs in families.)...
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    To vaccinate or not me and my children

    taniaaust1, do you have any idea what this study might be? I'm asking because when talking to doctors, they want to see studies, not "someone on a forum said..." Could you tell me more about this as well? Is this from Dr. Shepherd? I'm actually going to start a new thread on this, so maybe...
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    To vaccinate or not me and my children

    @barbc56: re CMO, see Charles Shepherd's posts above.
  12. N

    To vaccinate or not me and my children

    Thanks, everyone. Well, I don't think I will fully vaccinate, then. Now I just have to figure out which vaccines to do and which not. I guess I will do Hep-A, since we are going to Mexico and the MEA website poll returns only 1%. Hep B I might want to skip. But there are reasons I'd like to...
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    To vaccinate or not me and my children

    Thanks, everyone! Dr. Shepherd, thanks for taking the time and for including the research reports. I would like to read the CMO committee report, but I couldn't find it on the ME website. The search didn't bring it up. The link on the bottom right of the page for the archive requires you to...
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    To vaccinate or not me and my children

    Hi everyone, I've been searching through the forum to read what people think about vaccinations but came to nothing conclusive. I looked at some of the scientific research, but I don't have access to PubMeds I can't read the full papers. It seems like some of the research, e.g. linking vax...
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    BRAIN FOG: What has helped?

    Freddd, please warn about zinc aspartate Freddd, I am appreciative of all the research you've performed and shared and respectfully request the following: I believe I am not the only one who would appreciate it if where listing your protocol / supplements, you indicate/warn that the...
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    XMRV and epigenetics - a possible mechanism?

    I would be interested in reading about this study if you can find it. Thanks, Nina
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    Disability benefits only if worked recently?

    I heard that in order to be eligible for disability, you need to have worked within a certain amt if time. I've been a stay at home mom for years, although I did do a little bit of freelance from home. Does anyone know? Thanks, Nina
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    Dr. Light on Beta Blockers for ME/CFS

    Susan, this sounds like me. If the cat meows at night I am up with heart pounding for hours. I am taking a beta blocker (propranalol) as well as klonapin and they help a bit, but not in the wee hours of the morning when I wake up with a panic attack. I read on another list...
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    Is ME/CFS a chronic pre-cancer state?

    Can anyone suggest a readable source of info on Dr. Kerr's work on gene expression and CFS subtypes? I started googling but got overwhelmed. Thanks, Nina
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    Dr. Salvato's opinion-XMRV

    My EBV test results Lucie, This is what I mean. My recent CPL test shows: Nuclear Antigen IgG: positive / high Early Ag (antigen?) IgG: neg VCA IgG: positive / very high VCA IgM: negative which the interpretation report shows as a remote past infection, since Early Antigen is...
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    Dr. Salvato's opinion-XMRV

    Salvato testing fro XMRV -- > covered by insurance? Not withstanding what I said in my previous post, I am interested in getting tested from her. Any thoughts on the likelyhood of this being covered by insurance. As I recall, she does manage to get alot of stuff covered, which ios great...
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    Dr. Salvato's opinion-XMRV

    My Salvato Experience My sister and I were diagnosed with CFS by Dr. Salvato a couple of years ago. Of course at the time I was so grateful to find a doctor who specialized in CFS. I showed high EBV (chronic mono), low immunoglobulin, high candida, low glutathione and low ATP. I was...
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    CCFS Advisory Committee Meeting - Will be Webcast Live

    What he and Wanda were saying is that the recording WILL be archived on the site and will be available. (I don't have the link to that "past events" page but when I looked at it this morning it already had video from meetings as recent as Wednesday). Then he went on to say that maybe the...
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    CCFS Advisory Committee Meeting - Will be Webcast Live

    I was disappointed and surprised to, but I wondered if she wants to speak tomorrow? Just wondering because Wanda did seem to indicate to a copule of people from the waitlist that you could decline to speak at that point but still be on the waiting list. I dont know if that scheduling...
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    How would you design a follow up study to WPI research?

    Alice and Jen, I hope we are lucky enough that what each if you proposes is researched. Alice, I definately think the seperate UK ME groups is a good idea. Making the comparisons you state would help define which illness is what. My biggest fear is that there will be studies where so many...
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    XMRV - Hope and Caution

    Summer, I think this is a circular argument, in that the patients that were tested meet stricter criteria than most do, right? I mean they all came from areas where outbreaks occurred. That means that isolated cases were not represented, and I can't believe that the ratio of outbreaks to...
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    XMRV - Hope and Caution

    Peterson on Joey's blog vs Mikovits per Summer Regarding the issue of whether (nearly?) all CFS/ME patients will be found to have XMVR, or only the viral-onset, this apparent contradiction concerns me: Why did Peterson tell Joey in August...
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    XMRV and Transmission: The Big Question

    Anybody know of any other studies/research re ME/CFS and specific vaccines? I've had symptoms since childhood so way before Hep B (I as born in '65), but I did have extra vaccines as a child (relative to the normal schedule which if course was a fraction of what kids get now) because my dad was...
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    Non-XMRV subgroups and mercury?

    Sara, Dr. Salvato took a blood test and Labcorp analized it: Cyclic AMP, Plasma [Labcorp lab code = 004984] (Salvato said this is how you measure ATP, should be above 30) Here's the complete list of Salvato's testing for CFS (as of Jan 2007) with the Labcorp codes: > Cyclic AMP...
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    Non-XMRV subgroups and mercury?

    This would be speculation, of course, but any thoughts about whether/how mercury toxicity might be associated with a CFS subgroup and whether that subgroup is more or less likely to be XMRV positive? In other words, would mercury toxicity (including "Amalgam Illness") be more likely a...