XMRV - Coming to terms with a new reality

[rockfaery]

This is my first post on this forum.. I was previously a member of other support groups and forums but so far I really enjoy the the atmosphere of this one and i hope to be an active part of this group. I am so overwhelmed by the fact that there is actual news.. no more spending hours reading through completely useless psychological studies (this coming from someone with ambitions of being a psychologist lol). This may end up being more of a rant because I just don't know who to talk to about this...
I was a little late finding out about the virus because my job pretty much saps all the energy I have.. but ever since I learned about XMRV I can't tell if my world is crumbling or if this could finally mean rising from the ashes that are my life.. The idea that I could have possibly given this to people that I love breaks my heart. I have always wanted children and a family and now I wonder who would want that with me? Do I even want that if there is a possibility of passing this on to my children.
While it does feel amazing to know that within 6 months the world could know that this isn't just the yuppy flu, it also begs the question how will we be treated if people see us as contagious? What's worse being treated as a lazy good for nothing malingerer .. or being treated as a leper?

I also can't help but feeling so angry I can barely contain it.. probably a good thing I'm so darn tired! How could they have known about this almost 20 years ago and done NOTHING!! How many people could have been infected because of needless ignorance? I guess if it can be transmitted via sexual contact or blood maybe it's a good thing that donating blood or engaging in physical activity makes us feel so darn crappy.

Anyways I guess that's the end of my ranting for now... hopefully someday soon I can feel the ground beneath my feet again.

Lorine

 

[Sing]

XMRV Politics, Connection with Lyme?

Yes, I've been so high from the validation I felt when I first read the headlines that I ignored all and any objective reasoning skills I may still have left. Today, I tried on objective reasoning, and didn't find the results nearly as appealing as I had hoped.

Long ago, lol, when I was still fairly well and a reporter, I visited a woman who suffered with 'Lyme Disease'. I ended up doing a series of articles on that illness. I won the Texas Medical Association's Anson Jones medical writing award ( per small newspapers) for simply reporting what 'he said' and 'she said'. I was objective. Just the facts as they came in, etc. Thing is, I don't know if any of what anyone SAID was even true.

I mean, I talked to a microbiologist, an infectious disease epidemiologist with the Texas Department of Health's Infectious Disease Epidemiology who told me that when she worked in pathology for 'a state', she found Lyme spirochetes in dozens and dozens of bodies of persons who she said were clearly wrongly diagnosed with Multiple Sclerosis, but was told by the state to stay silent on this, and to list the official cause of death as Multiple Sclerosis, to not inform the families. This woman is very credentialed. She volunteered this information. I believed her. Sure raised some questions about the politics of medical information.

So, yeah, I keep replaying this in my head. And I keep wondering who has vested interest in what, and where XMRV will lead us.

The reason I was even thinking about Lyme disease is the connection between ticks as vectors, mice and... xenotropic murine retrovirus.

I know so many who 'have' Lyme disease, who suffer tragically, yet I note that its not fashionable to have Lyme disease anymore. ( What up with that?) Doctors are now saying that Lyme spirochetes are goners from the first round of antibiotics. But I note that the patients are not getting well. hmmm~ What if the spirochetes were never the problem? What if XMRV was?
Or what if the R Nase L enzyme is the culprit? Mitochondrial abnormality/immune deficiency first, at the headwaters, and then the cascade of insults downstream?

I pray that XMRV is key to many doors. Some seem deliberately locked.

Learn more about ticks as vectors, and the faces of Lyme Disease here:

http://www.lyme.org/ldf/rawlings.html

Bear with me, please. I am practically braindead. Seriously.

Delete the post if you think it makes no sense...

Just thinking out loud and without very many brain cells.

Dear Bluebird,

I found your message fascinating and very well written. Thank you for the glimpse you gave us into the politics of Lyme Disease, by comparison, and about your background as a journalist. I think you offer some great ideas. I hope researchers and other thinkers take note.

Cecelia

 

[Sing]

Reply to Koan

Hey Islandfinn,


I don't know how long you've been sick but after the first decade I stopped wanting to talk about it at all. Now, outside of forums like this, I can hardly bring myself to mention it. I can't even talk about it to my doctor. Thinking about it makes me want to lie down on the floor.

Other people just aren't all that interested. I never mention it and, even though my friends never see me, none have contacted me since the news broke. I'm assuming they didn't see it. It just isn't big news for the rest of the world.

Swine flu is filling everyone's infectious disease thought receptors. As well it might.

This is just a snowball now. There may be an avalanche.

Gosh, English is such a hard language! And, it's the only one I know

You are so funny, Koan! I've had this illness for 15 years and gave up trying to tell people about it, mostly, a long time ago. Now I only talk about it on a need to know basis and then only as much and when it feels appropriate. Even then I usually strike out, encountering disinterest and denial--but, some few people are nice and do retain some part of the information I give them.

And you know what, I react the same way! I am not interested in the subject and do not like to go into its negativity or identify as my body as much as this story seems to require. I also live in a kind of unreality and denial even though I am always coping with this thing...

Finding this forum a few months ago and starting to participate has been meaningful, rich, and revelatory--I thank you all for your voices.

And now there is the seismic shift of this news. Suddenly my physical experience entered social reality in a new way. As the most affected people, we are the first to feel the change. But this research is going to change life for many people and it has gotten the ball rolling, finally--finally--in the scientific realm. Isn't it something how we went from the z list to the a for research projects?

Praise be. But there will be negative consequences right alongside the positive ones--not so many, hopefully, but that is how it goes.

My best,

Cecelia

 

[Sing]

About our fears of contagiousness

My son sent me an email of the link to the NY Times article; nothing else. Not like him. (He's an adult and married). I know he is thinking of the transmission and AIDS "connection". I am mortified. I am concerned my boyfriend of many years could freak out and leave me. I am worried I will lose my business. I iwsh they would stop talking about transmission. I never got anyone sick since I got sick in 1989. I know for a fact that someone gave me CMV, and know other couples who "got very sick" at the same time. I "think" there may be an infectious time, and then it passes, like many illnesses. Perhaps, you also need a genetic predisposition. My great uncle who is now deceased had this illness as well. I hope that is the case. I am paralyzed with fear about what others will think. I went to work yesterday and today, worried People would bring it up. Nothing happened. I have only discussed this with a friend with this illness and my mother. Thank God for Mothers, no matter how old we are, or they are. They should not discuss transmission unti they know absolutely and for sure. It is not fair to us. Conversly, it is a way to get funding for research if it is a public health issue due to transmission. Dr Campbell's natural treatment says that the AIDS treatments are not good. I do find that the amino acids help.

Dr. Nancy Klimas, in her NYTimes blog a week or so back and in the video on ProHealth, comments on this subject. My memory is that she said it would be irresponsible of the media to classify this with HIV. She said that retroviruses vary greatly in contagiousness; many we are completely immune to; and so far it seems there is little evidence of family members or partners getting sick too--Don't quote me but go to Klimas for her views.

Take care of yourself!

Cecelia