Another XMRV positive for Spain ;-)

[serg1942]

Hi everybody,

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

Saluditos,
Sergio

 

[Enid]

Stunning news thanks for sharing with us and no "infectious" onset too. Opens up another window on these bugs.

 

[eric_s]

Hi everybody,

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

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.

It seems then that tonight I don’t sleep alone (I cannot imagine a better partner than a new retrovirus right now…can anyone??

Lol ... welcome to the crazy world of CFS

 

[Alexia]

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 !

 

[Jemal]

Hi Sergio,

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

 

[Daffodil]

hi sergio. thanks for sharing your results. i hope i am positive for the virus too...so i will say congratulaions!

 

[Dreambirdie]

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?

 

[illsince1977]

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!




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

 

[leela]

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

 

[Rrrr]

felicidades, sergio. yo tambien estoy en este fiesta de xmrv!

 

[Sushi]

Hi everybody,

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

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

Saluditos,
Sergio

Congratulations Sergio! :tear:

I am SOOO jealous! 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

 

[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

 

[illsince1977]

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

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

XMRV has 95% homology with human ERVs. What is very interesting about ERVs and likely true for XMRV is that they are TH1 immunosuppressive which is believed to be critical in the ability to get pregnant as the mother needs to be Th1 immunosuppressed to avoid rejection of the implanted fetus. The hormones of pregnancy and especially progesterone are in part responsible for activating env proteins of ERVs which apparently are largely responsible for this immunosuppression.

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.

 

[serg1942]

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

 

[serg1942]

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

 

[serg1942]

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

 

[serg1942]

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

 

[serg1942]

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

 

[serg1942]

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

 

[serg1942]

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