Discussion in 'XMRV Testing, Treatment and Transmission' started by hensue, Dec 2, 2009.
You are a bad, bad man. Give over all the details, now or I'll bite you (grins)
Levi! Did you see this live?
(and yeah, what George said, or I'll...spray you with water from my trunk?)
When was the video?
Why was it embargoed? When will it be released?
Thanks a bunch
I truly appreciate that you reached out to me, but you have nothing to be sorry for. I didn't see any of the deleted/edited posts, but in your first one to me, you told me you didn't like what I did and why. You reacted the way you reacted - over/under - who am I to say. I so wish that I had been online on Tuesday and could have perhaps stopped the thread from going to the place where it needed to be moderated. Maybe not, maybe I would have screwed things up even more.
The thing I am focused on now are your test results and how you feel about them. I know that feeling you describe so well - the one where you feel like you've been punched in the stomach. I know it so well. I imagine that the next few days and weeks will bring up an array of emotions for you. As best you can, try to hold onto your center. We know few things about XMRV, but Judy Mikovits believes that stress can contribute to its level of activity. Do whatever you can to *not* feed this retrovirus with the stress hormones it seems to thrive on.
As I wrote the paragraph above, I realize that I am talking to myself as much as I am writing to you. VIPdx has my blood now and no matter how I prepare, I know I won't be able to stop that punched-in-the-gut reaction if I test positive.
I wish only the best for you and your family,
Thank you for sharing this. For some reason knowing you tested positive makes me think that I will be testing positive also. VIPDX have had my test for three weeks now, the longer they have them the more I think they are finding something in my blood.
Regarding family members and friends. My sister-in-law came down with CFS in the late 80's after college. I meet her brother in 1989 and in 1991 I came down with CFS, Her and I think that I possibly got CFS from her. In 1993 a friend of my husband came down with CFS and died this year from esophageal cancer. In 2005 an employee of my husbands that I had been around came down with epstein barr and was sick for a long time. My mother is 67 and has always been a size 12 this year she has lost so much weight she is now down to a size 4. She has had every cat scan, pet scan and test and everything comes back normal. Last week I told her to get a EBV test done. I think that my older brother shows signs of CFS and wonder sometimes if my son also might have it. Three years ago he had mono but bounced right back out of it. My daughter is 22 and seems fine, she has a two year old daughter and I'm very careful around her. I want to kiss on her all the time because she is so cute. I usually try and kiss her on the neck.
OK I'm done, thanks again for sharing.
Is this someone's post on the UOP meeting?
Interesting that we have substantially more people testing positive on the culture test than negative; it looks like its there in a substantial portion thus far and its active in about half of them.
Interesting stuff! Still very few results.
Staci Stevens says it will be embargoed until they publish some more papers - so it could be quite a while. I think its a smart move - they want to consolidate what they have before they come out with more - thats the best in the long run I think. They could edit the offending parts out but I didn't get the impression that they were going to do that.
I have not been keeping up with this video Levi you and Cort are talking about. Have to sort it out tomorrow. Where I live it is 12:14 am.
I am 30 miles from Florida line. Nancy kilmas is in Miami?
What about cancer? both of my parents died of cancer. One 4 years ago and the other about 11 years ago.
Thanks for all the info keep it coming
"Active"? I thought the culture test represents a latent or past infection, while the PCR test means 'active' or 'current'?
I'm glad you finally know. It's interesting that you were diagnosed with just FMS, not CFS too. Do you think you have CFS? Thank you so much for sharing your results with us. I can't imagine how nerve-wracking this must have been for you. I cried when I read about your concerns for your children and grandchildren. I pray they come up with some drugs to treat us. Dr. Luckett has mentioned 2 that may work so far.
Because I've known you for a long time this just seems so much more real now. Hugs to you hensue.
d.- I believe that the Culture test shows XMRV in the white blood cells and that the PCR test shows it in the bloodstream.
Hensue, I'd love to know more about your health history--when you got sick, what your worst symptoms have been. I (along with everyone else) will be hanging on your every word, looking for patterns, similarities and co-infections, and trying to figure it all out.
Thank you for posting your results.
I got sick in 1988 flu
I went on a round of antibiotics 3 times. My immunity was gone, I finally got over the flu or so I thought. I started getting so tired I could not move. I was working and raising 2 very active boys. After that I started going in to early menopause( all you guys want to hear that) My mother was totally through menopause by 41. So I did not think anything about it.
I started having bladder spasms, kept going from gyno to urologist. All this time my head started hurting. Right out of the blue I would start having chills, sore throat and flu symptoms. All these weird symptoms but classic the docs said. The worst symptom was pain, when I say pain I mean from head to toe where you will commit suicide. I was not going to live like this.
I went to my first doctor and described all these weird symptoms. Of course every test came back negative. Except all the viruses herpes, ebv you name it they came back positive. My doc seems to think nothing of that he says 98 percent of population will test positive for those viruses.
He told me I had classic symptoms of fibromyalgia. I did not even know what it was. Then he gave me elavil, which I immediately thru away because I thought he thought I was crazy. Giving me an antidepressant
Another thing during this time my blood pressure went sky high because of the pain. That is one reason they could tell I was having so much pain.
Out of the blue something happen to metabolism, I gained close to 40 pounds
in just months.
During all this I am still doing my job as an office manager, accountant and sales.
I did not believe my doc so I went to another doc a Neuro in Fla.
I did not tell him about my diagnosis. I just gave him all my symptoms.
He said word for word you have classic symptoms of fibromyalgia.
Elavil which I threw away. I am pretty hard headed.
I then looked up a doc at Emory Hospital in Atlanta Ga a Neurologist.
Why a neurologist? I felt like it had to be with the nerves and brain. Not everything could go so haywire so fast. The pain was excrutiating, by the time I got to the hospital. I had pretty much decided to jump in a river.
Seriously I told myself no one can live with this pain. So I was going to end it.
She my doctor did all the neuro testing for any diseases or conditions. All the blood work for two days.
She pulled me aside and looked me dead in the eye. You have fibromyalgia classic symptoms and you are going to have to accept it. So I did, after the deepest darkest depression of there goes your life as it use to be.
Very active type A personality. Stay up all night cleaning on Fridays so I could play on weekends and be outside or active with my family.
I use to run everyday and walk sometimes 4 to 5 miles. Size 6 now a size 12.
I started reading everything and researching and learning to live and pace myself.
Now that I am older about 2 years ago I could not work any longer. So I quit the pain was to much and the fatigue>>> you know the fatigue.
My doctor just called
He said I have looked into the xmrv science study and only 68 percent of people have this virus. 4 percent of healthy controls also. From a medical standpoint right now I have nothing to offer and we do not know conclusively that it is the cause of fibro chronic whatever. He said I also saw where they found it in aggressive tumors here in us and not in Germany prostate tumors.
He said It is a very important finding but lets wait until we know for sure.
Unless you want to get into some clinical trials.
At least he is looking into it now and it has sent a red flag up. I told him I always new there had to be something that caused all this illness.
He again said it was very interesting and did not want me to think he did not care.
At this point we will sit tight till we know more.
I was very excited to know that he even gave a crap. This is what I have always loved about him he looks into things.
He said I want to wait until it has been validated and more testing and treatment available. At this point there is no treatment for xmrv.
Just to let you know I did get a response out of my doc. He did not just brush it aside.
And that's exactly how it should be and needs to be. There is a long and exciting road ahead of you. In just a few years you will be the expert. I hope that you stay part of these boards and help all of us with whats coming in our future.
We can't do this without you.
You asked about Klimas earlier - her clinic in Miami:
I am glad to hear you have your results and that the uncertainty is over. Of course the idea of having a retro virus is scary, but at least now you know what you are fighting, and you can start planning for the future.
Think of it this way; Nothing really changed; you already had this virus, but you now know you have it. This piece of information can only be an improvement from before, as you can now ensure better treatment and prevention.
Also, note that 4% of the healthy people carry the virus, so if we estimate that 1% of the total population has cfs, then 80% chance your kids and grand children are fine, GIVEN that they have the virus. However, they may not even have the virus, so the actual chance that they are fine is much higher than 80%, so not to worry about that. If they do get sick later; in a few more years we will probably have treatment for this virus, and especially in early stages of infections, they will be able to treat.
The only thing you have to think about right now is how to improve YOUR quality of living. right now. With this additional piece of information, that is going to be easier as it was before.
(BTW I am still not having the results; they are reviewing it for testing it AGAIN, Grrrrmbl I hate this insecurity)
thanks levi I dont live in florida I live where Reeves is
They only thing there is my husband and I traveled in his work probably close to 25 different states and we lived and he worked in them. So there is no telling where I got this.
I live close to Florida. The wild thing is he might be working in Nevada in the spring in a remote area. He does not know anything about this.
It makes sense; recent virus, slow replication, little genetic variability - it doesn't look like a virus that thats been around a long time.
A word of caution - I just talked to someone who attended the OFFER conference in Utah. Dr. Bateman said 10% of her patients looked like the patients in that study - they were not typical as has been said many times. Only time will tell.
The Science study? And "like" in terms of symptoms, or in terms of XMRV positivity?
You can also try a Google Site Search
Separate names with a comma.