Another XMRV positive for Spain ;-)

[Berthe]

Sergio, felicidados!

I also consider moving to the States for a treatment when I test positive. Can you tell me where you are and what doctor you reccomend?

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[cansado]

Really? You would move to the US to receive treatment? I just did vice versa. I have lived 10 yrs in the US, and never had any results. The only result is that your wallet is empty more quickly than in EU.

 

[Berthe]

Hi Cansado,

It al depends on the progress made with the anti-retrovirals. I think there are more doctors willing to subsribe them in the States then here in the Benelux. The progress made in the last ten years is lousy in every part of the world. For the first time in ten years I'm getting a bit of hope and becoming carefully optimistic.
If you see dr. De Meirleir here in Belgium, your wallet will be as empty as in the States, I guess.

Love,
berthe

 

[cansado]

I can say from experience that your statement about the cost is not correct!

But it is all about feeling better of course.

TC

 

[serg1942]

Hi Leela,

Hey, very glad to know that more people manage with Spanish here! (I felt so alone).

Well, I have to say that you are right in that just a few Spanish patients (including me) and few associations of patients, are the only resource of truthful information on CFSAs I said, the linguistic barrier is too big, and the national media are not helping at all to pass the reality of the illness on to the societyThis makes me very sad, cause theres no worse cage than the lack of information

On the other hand, yes, I think we, PWCs are brilliant :victory:, as autistic children are. I think this is because our genetics predispose us to have higher levels of glutamate, what also makes us more prone to fall sickSo I agree with you in that if all PWCs would get cure right now, we could change the world!:sofa:

Saluditos,
S.

 

[serg1942]

Hola Rrrr!!! Por ahora no hay mucha fiesta en Espaa, pues creo que soy el segundo espaol en saber que soy XMRV+...As que habr de esperar a que la fiesta se anime!!!

 

[serg1942]

Hi Lisa,

In response to your question, yes, I fell sick a few months after my third and last tetanus vaccine, that at least then, contained mercury(I was given these injections because I had a very bad car accident, so the physical stress it caused, for sure contributed to the onset of my disease as well).

Yes, it seems that a big epigenetic event needs to occur in order to develop an active infection by XMRV. One example is an study presented at the last International workshop on XMRV, in which they infected monkeys with the virus, and after roughly a year, they didnt present any sign of pathogenesisClearly they should have injected some toxic or some co-infection to these monkeys in order to precipitate some disease(Poor monkeys, BTW!!!)

Saluditos,
S.

 

[serg1942]

Hola Berthe, GRACIAS!

Well, this is difficult…you can PM me if you want and I’d be happy to tell you the details of my past treatment in the USA, ok?

What I can tell you is that I was treated by a very good doctor, and, although unfortunately the therapies she was used to work with didn’t work for me, all the tests she prescribed and my response to the treatment, helped me to get myself convinced about XMRV being playing an important role in my case…So I decided to run the test.

Now that I know I am XMRV+, I am thinking what to do next. I am going to stay a few more months in the USA, to study the treatment options, as here there are more treatment possibilities. On the other hand the prices are prohibitive in the States compared to Europe, so everything is is in the air right now…

Besos,
Sergio

 

[serg1942]

Hi Cansado,

I guess it depends on the CountryIn Spain the possibilities were very limited, and there were many tests that I wanted that I couldnt run from Spain.

I agree with you in that the price of medical care in the USA is amazingly prohibited compared to Europe, but also, and I think it is because of the political union and also due to the fact of speaking the same language, the possibilities are much greater

Anyway, I may decide to come back to Europe to receive treatment, if I decide to treat XMRV, as I dont think I could afford ARVs or other drugs here in the States, while in most of European countries they are either for free, or at least much cheaper

Saluditos,
Sergio

PD- I guess you chose your nick on purpose, right?I am also cansado! :In bed:

 

[Sushi]

I'm not from Spain, but I posted on this thread before so want to report in--finally got my results after my Doc's office sitting on them for 4 days: POSITIVE by culture! Serology pending.:victory::victory::victory:

How weird we are to celebrate having a retrovirus, but that is how I feel. We don't know where this research will lead, but at least I know something concrete now and can hone my game plan better.

I guess my game plan is 1) killing--in a way that doesn't kill me, and 2) enhancing my immune factors. And waiting, reading, thinking....and spending more money! :tear::tongue:

I think I've had this baby all my life--have had symptoms--as did my Mom.

Sushi

 

[richvank]

I'm not from Spain, but I posted on this thread before so want to report in--finally got my results after my Doc's office sitting on them for 4 days: POSITIVE by culture! Serology pending.:victory::victory::victory:

How weird we are to celebrate having a retrovirus, but that is how I feel. We don't know where this research will lead, but at least I know something concrete now and can hone my game plan better.

I guess my game plan is 1) killing--in a way that doesn't kill me, and 2) enhancing my immune factors. And waiting, reading, thinking....and spending more money! :tear::tongue:

I think I've had this baby all my life--have had symptoms--as did my Mom.

Sushi

Sushi,

Congratulations! (I guess!) I hope this turns out to be a positive development.

Best regards,

Rich