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i think i got XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by roma, Oct 26, 2010.

  1. mellster

    mellster Marco

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    I gotta be honest, right now I am leaning more towards what Esther said but I also have to admit that the mystery around these stories captivates me and lastly, yes, don't let anybody discourage you since only you are in command of your health. I have another question about the teethmarks on the tongue, why is this so mysterious? Couldn't it mean that you may have bitten or at least pressed the tongue on your teeth while sleeping or are more predestined to do so due to jaw structure etc. ? Also then it could be swollen due to that or it was swollen before and then it was easier to get teethmarks on it. I mean I have occasionally been clenching in my sleep and it was not uncommon to wake up with the tongue pressed firmly against my teeth. Or are you suggesting that a much stronger force like a seizure is needed to put teethmarks on a tongue? cheers
    tonydewitt likes this.
  2. tonydewitt

    tonydewitt

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    Mel,

    I have to say that I have seen the "teethmarks on the tongue" complaint so many times that I'm curious as to what that means too - if that was my only health problem, I wouldn't have a care in the world!
  3. tonydewitt

    tonydewitt

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    X,

    I've been asked that HTLV question multiple times - my first guess is that at some point it was decided that HTLV was limited to places like Japan, South America, and the Carribean, and couldn't become a worldwide epidemic of 25 million people. My best guess is that HIV takes the spotlight and can't be shared with other retroviruses - just try mentioning HTLV on the MedHelp site (they will censor you and Dr. HHH will tell you that it's not even an STD), or on the POZ site (they will permanently ban you from the site). Whereas my first guess describes casual neglect, my best guess describes extreme censorship and conspiracy.
  4. xrayspex

    xrayspex Senior Member

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    so our country was forced to deal with AIDs cus of the intense activism otherwise they may not have plus you die from it and htlv and maybe other (retro) viruses also exist but the government, insurance companies, avoid highlighting it due to financial concerns of paying for it and/or fear of people finding out how it originated and some liability? It does sound like a conversation out of the movie Slacker yet I think in this case its true. But could a conspiracy that big and involving several orgs and many people really be pulled off this long?
  5. xrayspex

    xrayspex Senior Member

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    being on the front lines and not in research I do see how people conform (like my doctor) to "best practice" expectations, not doing extensive testing for malaise sort of things etc and pretty soon the mythology around "evidenced based" becomes something they have internalized and lose their drive or remembrance of need to practice outside of the prescribed box....no need for external mandates after a while because healthcare workers conform willingly then

    so I wonder that it may be like that in research then too
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    People die from CFIDS and ME also, seems more prevalent in the UK, perhaps it's just there media? There have been a few notable deaths in the US. Perhaps not everyone dies Directly from the illness, but suicides, because of the lack of support and treatments should also be attributed to this dam disease!

    GG
  7. xrayspex

    xrayspex Senior Member

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    Good point GG, I stand corrected, and I should know better
    I guess I'm thinking a fair number of folks can languish a farily long time without antivirals with CFS whereas with HIV its more dramatic for majority.....I am just brainstorming wondering, per usual, why things are the way they are.......

    and I am not typically suicidal myself but I definitely have times where the hopelessness of how the medical system neglects me/us really discourages me......when I am in flare up it feels so unfair not to get the same consideration as say someone with a more recognized medical condition like diabetes or cancer or MS gets....knowing some people are thinking if ya just find the right therapist it will all get turned around
    ggingues likes this.
  8. tonydewitt

    tonydewitt

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    The "plus you die from it" point deserves more examination - I believe X's point was people die sooner and perhaps more horribly from HIV, which puts HIV into the spotlight, but GG's point is valid as well, having something that makes you not want to be alive is a bad thing also.

    The sugar coating of HTLV is that only %5 of the infected will experience paralysis or death from leukemia, and that even in those cases, that takes several decades. Well the truth is that people progress to paralysis or leukemia much faster than that - I've been in touch with a guy in Italy with HTLV who has leukemia only 7 years after being infected, with his wife & young child suffering with paralysis. I'm disturbed that every AIDS death is connected to being caused by HIV and the immunodeficiency it causes, but HTLV has no such bearing on death, unless it's leukemia. I say this because one of the face book posters is a woman who has HTLV who is being told by her doctor that her lymphoma diagnosis has nothing to do with her having HTLV. But if the same woman had HIV instead of HTLV, they'd say of course your HIV is causing lymphoma! Can doctors be that dumb?
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I understand, it almost slipped by me. I am not "severly" affected (at the moment), but affected enough for me!

    GG
    Xandoff likes this.
  10. tilt

    tilt

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    HI Roma. I hope you are better of now, as I have exact same symptoms as you. I have written in your inbox, hoping one day you will read this thread again. I really need to talk to you, just to get some advise and hear have you are dooing today?

    best wishes

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