Looking Ahead: XMRV - the Potential For Change

[Forebearance]

looking ahead to XMRV's potential

I would like to imagine that some good doctor will figure out and explain the connection between XMRV infection and biotoxin illnesses. Maybe it will be discovered that this retrovirus affects the immune system in such a way that our biotoxin susceptible genes are turned on and we become so poisoned by Lyme or Mycotoxins or the other biotoxins.

I want the WHOLE illness to be explained and understood. Including why I must live on the precarious edge of being homeless all the time because of my hyperreactivity to mold toxins.

I'd like to imagine a Run for the Cure for CFS patients, with T-shirts and balloons and publicity. Except by then we'd be known as XAND patients or something else. I'd like to imagine charitable organizations set up to deliver meals to us and take us to doctor's appointments. I'd like to see us embraced by society and cared about!

Forebearance

 

[jackie]

Hi everybody! Yep, I'm feeling pretty good about yesterday's doc visit, so thanks for the supportive words! It was truly a milestone in the course of my illness.

Jenbooks, I think my Doc WAS thinking of me when he researched the virus on his own - he has very few other patients with ME/CFS and because he prides himself on being a very good diagnostician, my illness has puzzled and irritated him for a long time!

Funny, you know what also seemed to impress him (he's European) was the info re: the EUROPEAN ME ALLIANCE. Eight Countries pledging support for the U.S. and congratulating the WPI carried some weight with him!


Just like all of you, I've left doctors offices in tears and desperate or absolutely despondant, more often than not. Many times if I was able to drive myself I'd have to pull over 'til I'd stopped crying.

But that's finished and in my case the next visit will be with Dr. Chia and then the fun really begins!

And Finch, starting a topic for everyone about reactions from the medical community is great! I don't know how to move this one though?

I'm really anxious to post about Dr. Chia visit coming up - what will his next move be, as he's aggressivly treating the Enteroviruses?

You know, I have the strangest feeling (intuition, instinct, "gut" - no pun intended! - feeling) that in my particular case, I won't test positive for XMRV. Could it just be that I've never tested positive for anything, like so many of us, in the past?

Don't know - maybe I'll just be the old-fashioned garden variety ME/CFS. But this time around I'll be REAL!

I won't be worse off than I am now, either way. For me, an antiviral or an antiRETROviral.

Most important, our collective landscape has been changed forever. We are "orphans" no more!

In contrast, a month ago at my neurologist visit (and after I'd labored for weeks trying to research the advantages of having your neuro do a Brain spect scan) here's what HE said: "WHY would I go to battle with your Insurance Co. trying to get a test that may ony benefit RESEARCH for YOUR obscure disease? I've got patients that REALLY need me. Now, come in here dragging a leg or dangling an arm (if you've had a stroke) and that's when I can help you". I told him thanks, but no thanks..........! His opinion no longer counts for me.

And guess what? I just fgured out how to use the SMILIES!

It's only taken me 2 months....and from my calculations (as I believe that my anti-viral has "kicked in" for brain fog) - an approximate total of 3,532,800mg. of Acyclovir - give or take a few.

There's no stopping me now.....jackielacie (I can be jackielacie as we have a new kid on the block - justjack jackie, a jackie, too! YAY, jackie's! unless I"M the new kid???)

 

[leelaplay]

hi jackie so encouraging to hear good news like this.

Funny, you know what also seemed to impress him (he's European) was the info re: the EUROPEAN ME ALLIANCE. Eight Countries pledging support for the U.S. and congratulating the WPI carried some weight with him!

great news. i hadn't heard of this.


[/QUOTE]And Finch, starting a topic for everyone about reactions from the medical community is great! I don't know how to move this one though? [/QUOTE]

I think moving it is a good idea. I'm hazy about how to do it, but can suggest 2 things:
1. post a message to Cort in the nuts and bolts section and ask him to move it
2. think you can also hit the new thread button (near the top left when you open a thread) and copy what you want of previous posts into a new post

[/QUOTE]Most important, our collective landscape has been changed forever. We are "orphans" no more! [/QUOTE]

sure hope you're right!

[/QUOTE]In contrast, a month ago at my neurologist visit (and after I'd labored for weeks trying to research the advantages of having your neuro do a Brain spect scan) here's what HE said: "WHY would I go to battle with your Insurance Co. trying to get a test that may ony benefit RESEARCH for YOUR obscure disease? I've got patients that REALLY need me. Now, come in here dragging a leg or dangling an arm (if you've had a stroke) and that's when I can help you". I told him thanks, but no thanks..........! His opinion no longer counts for me.[/QUOTE]

Crazy, isn't it. I had to move to survive ME/CFS better. I'm in Canada where doctor visits are paid for by our taxes (although extra costs are starting to creep in). In looking for a gp locally, had 3 doctors say to my face that they wouldn't take me as I was sick and they only take healthy patients. 2 more said they didn't take insurance cases.

Joke I developed but have never used with one of these ??doctors?? is
"Did you take the hypocritic or hypocratic oath?"

Looking forward to more reports!

 

[Finch]

To start a new thread

Hi Jackie - to start a new thread, just go to the main page where all the sections are listed, and click on XMRV/XAND. At the top left of that page, there's a button for "New Thread." Just click on that, and away you go. You could call it something like "Post-XMRV doctor visits - post here please," or anything you might think of that would give the idea.

I'm really looking forward to hearing about your Dr Chia visit!

In contrast, a month ago at my neurologist visit (and after I'd labored for weeks trying to research the advantages of having your neuro do a Brain spect scan) here's what HE said: "WHY would I go to battle with your Insurance Co. trying to get a test that may ony benefit RESEARCH for YOUR obscure disease? I've got patients that REALLY need me. Now, come in here dragging a leg or dangling an arm (if you've had a stroke) and that's when I can help you". I told him thanks, but no thanks..........! His opinion no longer counts for me.

This is incredible. These doctor experiences never cease to amaze me. I've been relatively lucky, I guess.

Anyway, I'm so happy you found the smilies! And I'm espcially so happy for you! You're truly making me laugh out loud! I hope it just keeps getting better for you.

 

[jackie]

One last post of the night for me! Forebearance, I can't quarantee an answer but I'll be seeing my regular Infectious Disease Dr. in 2 weeks, and I'll bring up the subject of Biotoxic Illnesses/XMRV.

Maybe I can TRY to pick his brain. He is one of the most brilliant men I've ever met (he makes me wish I was so much smarter so I could keep up with his conversations!) and he truly enjoys discussing the science behind all this.

I'll give it a try and let you know. I love your T-shirt idea, as well as a meals on wheels thingy, etc...but what we really need are personal assistants!!! I want my own, dang it!

Islandfinn, you've got a great joke there and I know JUST the Dr. I'd like to use it on!

I found the link to the EUROPEAN ME ALLIANCE on one of the threads here. I printed 2 pages out to read (their statement of intent, I guess you call it) including their press release congratulating the WPI.

They have a set of principles they intend to follow and are sincerely committed to providing accurate info re ME/CFS worldwide. It was very impressive AND very moving.

Also, I can't stop thinking of those 3 doctors you encountered who only took HEALTHY patients - and YOU were SICK??!!

Hi Finch! Maybe tomorrow I'll try and start up a thread for "Post-XMRV Doctors visits. Or...maybe in a few days!

My PEM (just from getting out of bed, dressing, leaving the house, TALKING for an hour to doc, AND the blood draw), ALWAYS (and I mean ALWAYS) just like clockwork, begins to kick in 24-48 hrs. after the "exertion".

It still amazes me after all these years - and I'm powerless to change the process! It's so familiar that it no longer upsets me - I just relax and hunker down to wait it out! I wonder if others have PEM that presents in the same way each time?

And I love my smilies - although tonight I'm too tired to play with them!

Frickly - Nope! I'm afraid I'm going to get pretty snarky with the next "unbeliever" I encounter in a dr's. office! Before long it may be some of our previously sceptical docs that will be experiencing the "awkward" moments!

"Man can believe the impossible - but can never believe the improbable".... Oscar Wilde

'night all....................jackie(lacie)

 

[Forebearance]

potential

Wow, thanks, Jackie. I would appreciate hearing your doctor's thoughts on the biotoxin/XMRV connection a lot.



Forebearance