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I Just Had Blood Drawn For the Montoya Study

Messages
7
i've been recently tested in Palo Alto for Dr. M's study

10 vials of blood did me in! the next day, down i went for a week. gums looked white. i was out of commission. i believe i got anemic on top of cfids.

Jane Norris told me she had sung Beatles' songs with someone! i brought a book, but wound up talking with Jane. she's very nice. was kind of mysterious getting there even with MapQuest directions. nice drive down from San Francisco.

we'll just have to put our results on hold and not worry about them. 6 mo's to a year is quite a while to wait.

i pulled out of the extra crash state from blood test. i wonder if that happened to anyone else. now i'm back to my usual downs & ups with cfids.

Dr. Montoya must have reliable testing protocol. i'd HATE for anything like what happened with CDC to happen with the XMRV part of his study.

situation with cfids has gotten ve-e-r-r-r-y interesting. i want CDC to eat crow. that's my fiendish wish- best, salome
 

leela

Senior Member
Messages
3,290
Just went down yesterday for this study...Jane is soooooo nice. It's such a pleasure to walk into a calm, quiet medical facility where the person already completely understands this illness and what it's like! No explaining! No embarrassment! Just easy, friendly understanding.

I'm just sorry we have to wait so long for results--which by the way they do eventually send to you.
She said they still have not got enough healthy controls (they want two per), and have not started pairing people up, nor have they fully decided on the list of pathogens, so testing has not started yet. Start sending your healthy friends down there! SHe mentioned it was in conjunction with Columbia university--I wonder if they are taking healthy control samples there?

I followed Dreambirdie's excellent advice and super-hydrated beforehand with coconut water. I had one brief moment of wooziness (very brief) but have felt perfectly great since. I kind of thought of it as a bloodletting (!) which actually can be useful when the blood is toxic. Kind of like the Keith Richards approach. ;)

It was altogether a pleasant experience, and I feel happy to have made my contribution to the science around this illness. Even if we don't benefit personally (though I hope we will) at least some future generation may reap some positive effect from our little offerings.
 
C

Cloud

Guest
I thought they requested those announcements and phone numbers be taken down because they were bombarded and overwhelmed with applicants. Indeed Jane is a sweety. They do have a preclusion list of which I qualified for....bummed, haven't been in the city for a while. Oh well, I have been tested inside out with Dr P anyhow.....did 32 vials of blood and a treadmill my first day of testing. Yes, I was sick for days. Good thing I wasn't driving myself. Couldn't drive back then anyhow.

Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun
 

Navid

Senior Member
Messages
564
leela;130458[B said:
]have not started pairing people up, nor have they fully decided on the list of pathogens, so testing has not started yet. Start sending your healthy friends down there! SHe mentioned it was in conjunction with Columbia university--[/B]

hi leela: i have an appt w/montoya on monday......so i was a little bummed to read they have not started testing at all. i gave my samples in the late spring......so there will be no results form all that blood draw when i see him on mon?....bummer.

thanks

 

leela

Senior Member
Messages
3,290
It might be different if you are his patient :)
Mote of envy that you'll be seeing him--2yr waitlist!! Have fun!
 

JAH

Senior Member
Messages
497
Location
Northern California
Cloud-

If I understood your post correctly -you were initially precluded from the study?? So was I, but the requirements changed, and I was able to get in. You may also,

JAH
 
C

Cloud

Guest
Cloud-

If I understood your post correctly -you were initially precluded from the study?? So was I, but the requirements changed, and I was able to get in. You may also,

JAH

Thanks JAH, maybe I'll give em a call. Yes, I was precluded, but it was in the very early days of recruitment that I spoke with her, and if I remember right, they were still working on the exclusionary criteria.

Your really close...convenient for you. Glad you got in.
 

JAH

Senior Member
Messages
497
Location
Northern California
Hi Cloud,

For some reason, I was thinking you were bay area when I posted my message- the fact that you are out of the area may preclude you- I know they are looking for local pwcs.

Results should be fascinating- really huge study. I feel lucky to have gotten in- just impatient for the results!

good luck,
JAH
 
C

Cloud

Guest
Hi Cloud,

For some reason, I was thinking you were bay area when I posted my message- the fact that you are out of the area may preclude you- I know they are looking for local pwcs.

Results should be fascinating- really huge study. I feel lucky to have gotten in- just impatient for the results!

good luck,
JAH

I'm about 5-6 hours from Palo Alto....don't remember that being a problem....but with my memory, anything is possible.
 

InvertedTree

Senior Member
Messages
166
FYI-the study is still open.

They are still in need of healthy control subjects. I'm trying to recruit healthy controls. The sooner we get the study filled the sooner we'll get the results.
 

Mr. Cat

Senior Member
Messages
156
Location
Nothern California
Study still going on.

I just had blood drawn last week. They said they are still looking for a few more PWCs, and aren't having trouble finding controls. However, I was told that none of the blood has been tested yet, due to "negotiations," so it still might be a while. I was also told 6-12 months. I'd like to see the results of the study.
 

leela

Senior Member
Messages
3,290
Has anyone received their blood results yet?
While they will now be woefully outdated, I really wanted something comprehensive to move forward from.
Two and a half years! Sheesh!
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
leela NO results yet! They said it would be 6-12 months to get them.
It's almost 3 years for me. I had my blood drawn in early June of 2010.

Ridiculous to drag the wait out so long for people who are so ill. Pathetic, actually.
 

leela

Senior Member
Messages
3,290
What I don't get is *surely* they've run it through all the tests by now, or most, wouldn't you think?
I can see how long *analyzing* the data might take, but I'd really like to see what blood results they've got now,
even if it's not complete.