1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Another XMRV positive for Spain ;-)

Discussion in 'XMRV Testing, Treatment and Transmission' started by serg1942, Sep 27, 2010.

  1. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi everybody,

    I have just received the test results from VIPdx, and I have been found XMRV+ by culture!!!:victory::tear:;):cool::victory:

    I also ordered the serology test, but it says: Pending, so I guess the culture test takes about three weeks, and the serology test is the one that takes 2 months. So I guess they will send me the serology results when they are ready.

    I have written a letter with some thoughts about this day, maybe a crucial day in my life (crossing fingers!), but its in Spanish. Anyway, for what it is worth, here is the link:

    http://www.sfc-em-investigacion.com/viewtopic.php?p=3178#p3178

    The fact that I am XMRV+ is important for me, aside from the obvious, because:

    1- It provides a little more of evidence for the XMRV to be a global infection (not just American)

    2- I am a toxic pacient with CFSNo viral onset, no viral symptoms, no mononucleosis pre-CFS, no evidence of EBV, CMV, Lyme, etc. It seems therefore that XMRV (and probably other MLVs) can be present in all CFS (with viral or toxic onset).

    It seems then that tonight I dont sleep alone (I cannot imagine a better partner than a new retrovirus right nowcan anyone??:eek:

    Saluditos,
    Sergio
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Stunning news thanks for sharing with us and no "infectious" onset too. Opens up another window on these bugs.
  3. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Hey Sergio

    Good the result was what you have hoped for. I have not taken the test yet, at first i thought i will do it as soon as a test is available, but then i changed my mind and decided to wait (for now) until there's a test where i can know the result is correct and until there are some more studies out. Even though since the Lo et al. study i say there is an association between XMRV and CFS. I would not want to get a possibly false negative result.
    Lol ... welcome to the crazy world of CFS :D
  4. Alexia

    Alexia Senior Member

    Messages:
    164
    Likes:
    0
    Portugal
    Hola Sergio,

    Thank you for sharing the results. I've read your letter and find it very well written and gives quite a lot of information for people who do not understand the situation. It was nice to read it, thank you for sharing that also.

    I hope things will improve for you and that this result will be a positive happening in your life.
    i buena suerte !
  5. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
    Hi Sergio,

    You being in Spain, how did you get your blood drawn and sent to VipDX (in the US)?
  6. Daffodil

    Daffodil Senior Member

    Messages:
    2,801
    Likes:
    777
    hi sergio. thanks for sharing your results. i hope i am positive for the virus too...so i will say congratulaions!
  7. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,014
    Likes:
    3,135
    N. California
    Hi Sergio--

    Thanks for the heads up with your results. It's amazing that you didn't have the viral onset... It puts a new spin on this disease, doesn't it?
  8. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    Hi Sergio-

    I recently found out I am positive by culture - just last week! Congrats! I share your feelings.

    If my onset was concommitent with a virus, it was with a silent virus like HPV (not flu-like virus), nor was it due to toxic exposure. I was also pregnant at the time. We exceptions will force a change in the disease model, I hope.

    Those sneaky microbes didn't get their visas and just snuck past the border guards. Illegal aliens! ;)
    The scientists and doctors just assumed they were law abiding citizens. So much for that theory!

    OMG, my body has been taken over by aliens!


    0060-0808-1313-4735&.jpg

    That explains everything! At last my suspicions are vindicated! But Simon Wesseley and Bill Reeves already knew that, didn't they?:scared:
  9. leela

    leela Slow But Hopeful

    Messages:
    2,382
    Likes:
    2,773
    Couchland, USA
    Sergio,

    I read your letter--it is so clear and brilliant. Your voice will be (as it is already, I presume) an invaluable resource to the
    Spanish-speaking world of CFSers.
    I look forward to the day when all our collective resources are able to shine, run, jump and play :)
  10. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    263
    felicidades, sergio. yo tambien estoy en este fiesta de xmrv!
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,687
    Likes:
    5,524
    Albuquerque
    Congratulations Sergio! :tear:

    I am SOOO jealous!:confused: When I heard your news I called VIP and they said they had faxed my results to my doc on Sept 19th! I called my doc and she said she hasn't received them yet. VIP had my results in front of their eyes and wouldn't tell! :Retro mad:

    So they said they would fax them to my doc at the end of their work day--which will be several hours after my doc's office closes. So, maybe tomorrow I'll be crying or celebrating. Mad world we live in.

    Sushi
  12. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    370
    twitpic.com/photos/SlayaDragon
    Sergio and Illsince1977, those are really interesting points.

    It's sounding to me more and more like XMRV is something that people can have for years and years (maybe since birth), until something happens to activate it.

    That "something" - according to Cheney - could be a vaccine, a Lyme infection, a flu, or a toxic mold exposure. I suspect that a flare of another virus in residence - like EBV or HHV6 - also could do it. And according to Mikovits, estrogen (like a pregnancy), androgens, cortisol and other inflammatory events also could do it.

    Did either of you get sick soon after getting any sort of a vaccine?

    Best, Lisa
  13. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    My understanding from reading Cheney's research website is he theorizes it's more the progesterone than the estrogen. http://www.cheneyresearch.com/topic/xmrv/page/2
    No recent vaccines for me. I don't recall having any vaccines after childhood, but my memory isn't perfect. The only reason for getting vaccinated I can recall would have been travelling to Israel and Europe years before, but I don't think I had any then, either. I don't think vaccines were recommended for travelling there, I have never had a flu vaccine in my life.
  14. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi Enid, sure it does! I always thought that I didnt match with the typical definition of ME/CFS, because of being of pure toxic onset, even though I fit the Fukuda and the Canadian criteria, suffer from mitochondrial dysfunction, have a methylation cycle block, adrenal fatigue, hypothyroidism, etc.

    Obviously, a virus candidate to be the cause of CFS must be global and present in all subsets of CFSSo far, so good then!

    Time will tell!
    Sergio
  15. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi Eric_s,

    Yes, right now a negative result I think just means keep looking, but still, it must be hard to receive a negative result, so I understand your position. However, I couldn't wait when I concluded than XMRV could make sense to explain the unexplained things going on in my case (I needed many months to convince myself)I guess the lack has been on my side though, given the circumstances testing-wise, but now I feel relieved, and ready to study this bugI think it is the incentive I needed

    Saluditos,
    Sergio
  16. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi Alexia,

    I see that we are almost neighbours! ;-) Im glad to know that some of you understand spanish in this forum...The linguistic barrier is the main problem Spanish PWCs are facing, as it is preventing them for having the only thing that give us power: information

    Thanks for your wishes, y mucha suerte para ti tambin!
    Sergio
  17. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi Jemal,

    Well, I am right now residing in the States. I came here 6 months ago to be treated, and Ill stay here until I decide my next treatment, as I think in the USA there are more treatment possibilities.

    Anyway, if I would have been in Spain, I could have sent the blood to the Redlabs in Europe. I think they are offering the PCR and the serologic tests (not sure), while It seems that culture is being the more accurate so far(just my impression).

    If you are asking this cause youre in Europe, I know a few patients who have sent their blood already to Redlabs in Europe, and are waiting for the results, so I can find out what tests they actually can do from Spain

    Saluditos,
    Sergio
  18. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi Dreambirdie, y

    Yes, as I said to Enid, the fact of being finding XMRV in Europe, and in patients like me, with absolutely no signs of viral onset, and also without signs of viral/bacterial activity during my disease, actually makes me think that this bad guy may have more impact than previously thought

    Saluditos,
    Sergio
  19. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi Daffodil,

    Yes, I want to be congratulated! People dont know whether its better to congratulate me or to offer their condolences! I want the first! So thank you!

    I also wish you to be hosting XMRV!
    Sergio
  20. serg1942

    serg1942 Senior Member

    Messages:
    340
    Likes:
    341
    Spain
    Hi illsince1977,

    Congrats for having this aliens in your body!!! You are so right, we, the exceptions may give some vital clues. I think the fact of us being XMRV+ augments the possibilities of this virus to be as important as wed like to, cause, for instance, in my case, it has been the first infection found to date (and I have being looked for most of the typical infections on CFS)Maybe it is just a coincidence. If this is the case, its a very bad joke played by destiny!

    Regards,
    Sergio

See more popular forum discussions.

Share This Page