There has been a lot of publicity about the recent discovery of the new retrovirus XMRV by Judy Mikovits and Vincent Lombardi in cooperation with the Whittemore-Peterson Institue and the National Cancer Institute.
I have been waiting to blog about, so many people have already wrote so many useful and excellent stuff that whatever I will write is not going to make much of a difference. I will limit myself to providing links back to what I think are excellent blogs about it and I will share with you what this all means for me personally because that is why I write this blog, not just to educate the public, there are so many people who can do that much better that I can, but to share with you an important part of my journey. Because we chronics are so isolated this is my only possibility to let my voice be heard. A treatment for this illness will probably come too late for me, I'm holding on by a thread and time is running out fast, but it is my hope that somehow somewhere people find inspiration when reading this to go on and to never give up!
I would like to share with you a wonderful article that was written by Lenita Powers for the Reno Gazette Journal. Please send Lenita a thank you note for writing so eloquent about this.
[quote]
Judy Mikovits remembers that "eureka" moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.
"It was January 22, and we were in a San Diego restaurant called the Yard House," said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world's leading virologists.
"We kept waiting for them to say something," Mikovits said. "I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, 'Well, this is going to change their world.'"
And it has.
[/end quote] click here for the full article at RGJ
That last sentence did me in and it kept going through my head IT HAS, IT HAS, IT HAS!!!!
It has freakin rocked my world and that of millions of others!
Not only did it rocked our world but it has given us HOPE and RECOGNITION.
Suddenly the government listened, the CDC listened(although with a half ear, still) and the media found us! Not only are we not crazy and need to be locked up for imagining a disease, it's actually what most of us have known for ages an infectious viral disease.
Granted a lot of research and comparable test needs to be done but the percentages found can't be that much wrong.
Now what exactly did they find? They found a new infectious human retrovirus, XMRV (a xenotropic murine leukemia virus-related virus), in the blood of 67 percent of the Chronic Fatigue Syndrome patients they tested. There are only two other known human infectious retroviruses HIV is one of them. The discovery means it is possible that XMRV is the underlying cause of ME/CFIDS
Of course a lot of fellow ME/CFIDS'ers were shocked, they are from the group that still hoped there was a cure for what they had and it probably never crossed their minds that at the base of all this could be a virus. I belong to the other group who always knew deep in their hearts that it couldn't be anything else than a nasty virus causing all systems to go haywire.
Than there was the note that said 'infectious' this send a wave of fear through the groups of people. What exactly did that mean? Could you give it to others around you?
Well yes and no. Dr. Mikovits has said she has found XMRV in saliva ("cheek swabs"), besides plasma and semen, and that indicates higher transmissability than was mentioned in the official release. It's possible it will be transmitted through the birth canal. More research is on it's way about this important part.
Having the retrovirus present in your blood does not mean you will get ill, in a lot of people it can lie dormant forever. It stays with you for the rest of your life because it inserted itself in your DNA. Having an active XMRV means it can be turned on and off like a light switch by factors, such as stress hormones like cortisol, or in response to the presence of inflammatory 'cytokines', protein molecules secreted by immune cells to help regulate the immune system."
This for me explains why my body is constantly trying to lower my cortisol and why I don't tolerate hormone medications where I'm low in according to test. The body had located the XRMV virus and knows that by producing more cortisol in reaction to stress the XMRV will be turned on and cause havoc. Same for the hormones I tried to take and that made me so ill. Doctors never believed me when I told them I could not tolerate hormones. Now I know why, the body lowers the hormones on purpose so the XRMV will stay in it's dormant state.
Many physicians are hesitant to celebrate with you the discovery of this virus. Most of them 'take a step back' approach and tell you nothing changed and nothing will change with this discovery. They think it's just another virus added to your already high viral load, just like your EBV or CMV. It's a bit disappointing but I can understand why they are being careful.
Saw dr. V. today we discussed the results of my extensive 24 vials blood test. He had the same opinion, I already knew because I saw dr. T's opinion on his web site and didn't think his corporate dr's were going to have a different opinion.
He is fully supportive of testing me for the XMRV and agrees I'm a likely candidate.
The wait is for the WPI(Whittemore-Peterson Institute) negotiations with the large labs to offer the same test the private VIP labs is offering but cost 650 USD. Which is a bit steep especially for those on disability.
If have very mixed feelings about the test, it's great to get the acknowledgment that you have a legit illness at the same time it means a life sentence with a heavy load of medications to keep the virus in check. On the other hand and this is my biggest fear, if you test negative, than what? Suddenly you don't belong in the ME/CFIDS group anymore but still have this unknown illness with a high viral and bacterial infections, you will not have the right to testing and medications others who tested positive will have. You'll be another outcast that will need to struggle and fight on by herself as you have done for the last 30 years. Can I cope with that or will the disappointment be too big to handle? I don't know. I just don't know and it's giving me sleepless nights.
Think of it this way dr.V says, nothing has really changed you're still the same with the same symptoms. So you can go on on the path we have set out. But that is just it. We want more, we want treatment not just guessing if this will work or not.
My tests results were a mix bag My EBV load was less but others were up, my Natural Killer cells were down to below 10. My cardio was up and I acquired a couple of new Herpes viruses so I have now the whole series. Anyone wants to trade let me know, I have doubles!
Heavy metals also showed up in my tests this time. Not good. Now I have to work on removing those and they will not go away without a fight I'm afraid *sigh* I can't get any sicker than I already am. I timed my standing up time, it was below the 2 minutes before I collapse in pain and exhaustion. How much more can I take?
We're about to find out I'm afraid.
For more info on XMRV go to the WPI website and check their Q & A.
Below are a few links to interesting articles and blogs about the subject.
Hillary Johnson's: Our Vietnam War Ended Today
Peggy Munson's blog: Fly Away to XAND-ado, or Where Is Elaine DeFreitas?
CFIDS Watch: Horror Statistics From US Government
RGJ Editorial: Researcher's discovery gives new hope to Chronic Fatigue sufferers
RGJ: Daughter's illness led family to seek help, start institute
RGJ: 'I don't ever want to seem like I'm suffering from this disease'
Dr. Donica Moore on XMRV: ABCnews "Does a Virus Cause Chronic Fatigue?" [Oct.19,2009]; Good Morning America Health
I have been waiting to blog about, so many people have already wrote so many useful and excellent stuff that whatever I will write is not going to make much of a difference. I will limit myself to providing links back to what I think are excellent blogs about it and I will share with you what this all means for me personally because that is why I write this blog, not just to educate the public, there are so many people who can do that much better that I can, but to share with you an important part of my journey. Because we chronics are so isolated this is my only possibility to let my voice be heard. A treatment for this illness will probably come too late for me, I'm holding on by a thread and time is running out fast, but it is my hope that somehow somewhere people find inspiration when reading this to go on and to never give up!
I would like to share with you a wonderful article that was written by Lenita Powers for the Reno Gazette Journal. Please send Lenita a thank you note for writing so eloquent about this.
[quote]
Judy Mikovits remembers that "eureka" moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.
"It was January 22, and we were in a San Diego restaurant called the Yard House," said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world's leading virologists.
"We kept waiting for them to say something," Mikovits said. "I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, 'Well, this is going to change their world.'"
And it has.
[/end quote] click here for the full article at RGJ
That last sentence did me in and it kept going through my head IT HAS, IT HAS, IT HAS!!!!
It has freakin rocked my world and that of millions of others!
Not only did it rocked our world but it has given us HOPE and RECOGNITION.
Suddenly the government listened, the CDC listened(although with a half ear, still) and the media found us! Not only are we not crazy and need to be locked up for imagining a disease, it's actually what most of us have known for ages an infectious viral disease.
Granted a lot of research and comparable test needs to be done but the percentages found can't be that much wrong.
Now what exactly did they find? They found a new infectious human retrovirus, XMRV (a xenotropic murine leukemia virus-related virus), in the blood of 67 percent of the Chronic Fatigue Syndrome patients they tested. There are only two other known human infectious retroviruses HIV is one of them. The discovery means it is possible that XMRV is the underlying cause of ME/CFIDS
Of course a lot of fellow ME/CFIDS'ers were shocked, they are from the group that still hoped there was a cure for what they had and it probably never crossed their minds that at the base of all this could be a virus. I belong to the other group who always knew deep in their hearts that it couldn't be anything else than a nasty virus causing all systems to go haywire.
Than there was the note that said 'infectious' this send a wave of fear through the groups of people. What exactly did that mean? Could you give it to others around you?
Well yes and no. Dr. Mikovits has said she has found XMRV in saliva ("cheek swabs"), besides plasma and semen, and that indicates higher transmissability than was mentioned in the official release. It's possible it will be transmitted through the birth canal. More research is on it's way about this important part.
Having the retrovirus present in your blood does not mean you will get ill, in a lot of people it can lie dormant forever. It stays with you for the rest of your life because it inserted itself in your DNA. Having an active XMRV means it can be turned on and off like a light switch by factors, such as stress hormones like cortisol, or in response to the presence of inflammatory 'cytokines', protein molecules secreted by immune cells to help regulate the immune system."
This for me explains why my body is constantly trying to lower my cortisol and why I don't tolerate hormone medications where I'm low in according to test. The body had located the XRMV virus and knows that by producing more cortisol in reaction to stress the XMRV will be turned on and cause havoc. Same for the hormones I tried to take and that made me so ill. Doctors never believed me when I told them I could not tolerate hormones. Now I know why, the body lowers the hormones on purpose so the XRMV will stay in it's dormant state.
Many physicians are hesitant to celebrate with you the discovery of this virus. Most of them 'take a step back' approach and tell you nothing changed and nothing will change with this discovery. They think it's just another virus added to your already high viral load, just like your EBV or CMV. It's a bit disappointing but I can understand why they are being careful.
Saw dr. V. today we discussed the results of my extensive 24 vials blood test. He had the same opinion, I already knew because I saw dr. T's opinion on his web site and didn't think his corporate dr's were going to have a different opinion.
He is fully supportive of testing me for the XMRV and agrees I'm a likely candidate.
The wait is for the WPI(Whittemore-Peterson Institute) negotiations with the large labs to offer the same test the private VIP labs is offering but cost 650 USD. Which is a bit steep especially for those on disability.
If have very mixed feelings about the test, it's great to get the acknowledgment that you have a legit illness at the same time it means a life sentence with a heavy load of medications to keep the virus in check. On the other hand and this is my biggest fear, if you test negative, than what? Suddenly you don't belong in the ME/CFIDS group anymore but still have this unknown illness with a high viral and bacterial infections, you will not have the right to testing and medications others who tested positive will have. You'll be another outcast that will need to struggle and fight on by herself as you have done for the last 30 years. Can I cope with that or will the disappointment be too big to handle? I don't know. I just don't know and it's giving me sleepless nights.
Think of it this way dr.V says, nothing has really changed you're still the same with the same symptoms. So you can go on on the path we have set out. But that is just it. We want more, we want treatment not just guessing if this will work or not.
My tests results were a mix bag My EBV load was less but others were up, my Natural Killer cells were down to below 10. My cardio was up and I acquired a couple of new Herpes viruses so I have now the whole series. Anyone wants to trade let me know, I have doubles!
Heavy metals also showed up in my tests this time. Not good. Now I have to work on removing those and they will not go away without a fight I'm afraid *sigh* I can't get any sicker than I already am. I timed my standing up time, it was below the 2 minutes before I collapse in pain and exhaustion. How much more can I take?
We're about to find out I'm afraid.
For more info on XMRV go to the WPI website and check their Q & A.
Below are a few links to interesting articles and blogs about the subject.
Hillary Johnson's: Our Vietnam War Ended Today
Peggy Munson's blog: Fly Away to XAND-ado, or Where Is Elaine DeFreitas?
CFIDS Watch: Horror Statistics From US Government
RGJ Editorial: Researcher's discovery gives new hope to Chronic Fatigue sufferers
RGJ: Daughter's illness led family to seek help, start institute
RGJ: 'I don't ever want to seem like I'm suffering from this disease'
Dr. Donica Moore on XMRV: ABCnews "Does a Virus Cause Chronic Fatigue?" [Oct.19,2009]; Good Morning America Health
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