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Cocoa
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Posted: Sun Oct 5th, 2008 03:49 |
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Hi All,
I've tried to watch some of the video presentations on Vimeo and even with the HD turned off, it keeps stopping and starting, making it virtually impossible to watch. one video takes a very long time to stream.
This happens for YouTube videos also, but with them when I stream them once I am able to replay without interruptions to the streaming, but on Vimeo replaying after the the intial play still includes the stopping and starting.
Can you recommend anything or do I have to abandon my Vimeo quest?
Thank you, Cocoa .
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CFS, POTS, rickettsia, tachycardia, 125D46, MP 8/07, ModPh211/07, florinef for BP, Lamictal, clonazepam, melatonin, NoIRs, limited outings covered up, low lux home, 25D12 Sept 07
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Ron
Member in Phase 2
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Posted: Sun Oct 5th, 2008 10:20 |
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Cocoa: have you tried waiting for the download bar to become filled with grey? It sounds like you have a slow connection.
You can pause playback and resume when the bar filled and the file download has completed. Probably best to try this with HD turned off.
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Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sept08 11.6| oxycodon, NoIRs, limited outings covered up
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Ron
Member in Phase 2
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Posted: Sun Oct 5th, 2008 11:53 |
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The transcript of Dr. Greg Blaney's presentation is finished, hopefully Janet can do something useful with it.
While I was listening to this presentation, some questions came to mind. Dr. Blaney compares the delayed immune response of some patients on the MP with IRIS, or "so-called Immune Reconstitution Inflammatory Syndrome that is seen in AIDS-patients with high dose HAART". He illustrates this with a case study in which a patient's 1,25-D level shoots up to 200nmol/L after a couple of years on the MP and presumable still on Benicar.
Why does this happen? And will the Olmesartan then still protect the organs from run-away immunopathology?
Another question: Dr. Blaney states that he " used Olmesartan even though you can use some of the other ARB’s". Isn't it so that Olmesartan possesses unique molecular properties and that only this ARB is usable?
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Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sept08 11.6| oxycodon, NoIRs, limited outings covered up
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Dr Trevor Marshall
Research Team
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Posted: Sun Oct 5th, 2008 12:58 |
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will the Olmesartan then still protect the organs from run-away immunopathology?
As far as I am aware, Dr Blaney has lost none of his patients to this point. So I guess that means their organs survived the IP
Another question: Dr. Blaney states that he "used Olmesartan even though you can use some of the other ARB’s". Isn't it so that Olmesartan possesses unique molecular properties and that only this ARB is usable?
Greg was speaking about the Angiotensin blockade leading to NuclearFactor-kappaB suppression and symptom palliation. One or two other ARBs can provide this benefit. However only Olmesartan provides the VDR agonism, and also has beneficial effects on several other key receptors. Greg meant for this to be a historical statement, not anything that he would contemplate doing nowadays.
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Rico
Member in Phase 3
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Posted: Sun Oct 5th, 2008 13:49 |
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He illustrates this with a case study in which a patient's 1,25-D level shoots up to 200nmol/L after a couple of years on the MP and presumable still on Benicar.
Why does this happen? |
Ron, I had approx the same 1,25-D measurement at the beginning of this year (I think it was around 190-195nmol/L). I wondered at the time why my 1,25-D level would have been so high considering I had been on the MP for 1.5 years, taking Olmesartan all that time. In fact, it was higher then than when it was measured just before starting the MP.
I was told by Dr B that it was probably transient immunopathology (herxheimer) which caused it to rise. I'm assuming he's seen this in several of his patients. But even at that high level (close to 80 pg/ml), I really didn't notice much IP (my symptoms are minor compared to many people here as I caught this Th1 illness before it took over my life - although I have to admit it was worse than I even realized, but that's another story).
Now, I haven't heard his presentation since it first came out last week, so I've forgotten, but didn't he say the same about his case study with 200nmol/L? That the high level was transient IP (not sure what terminology he used)?
Last edited on Sun Oct 5th, 2008 13:50 by Rico
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No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)
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Ron
Member in Phase 2
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Posted: Sun Oct 5th, 2008 22:19 |
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Dr. Blaney did not use the term 'transient' but I'm sure he was talking about 'Stage 5' of the MP.
Good to hear that this transition did not affect you very much. I'm still a bit worried though and wonder how it will affect someone with very severe RA as Dr. Marshall also states:
For those of us that were really ill to start with, there appear to be far too many of those "patches" of bugs popping up for the immune system to go after 
Only time will tell I guess.
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Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sept08 11.6| oxycodon, NoIRs, limited outings covered up
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Dr Trevor Marshall
Research Team
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Posted: Fri Oct 17th, 2008 05:02 |
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The transcript of Dr Blaney has now been finished, and is online at
http://AutoimmunityResearch.org/transcripts/ICA2008_Transcript_GregBlaney.pdf
Thanks to everybody who helped us with this.
Trevor
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Sunset
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Posted: Fri Oct 17th, 2008 20:49 |
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Thank you Dr. Marshall and your devoted team at the MP Study site. I have a much clearer picture of the secondary role of co-infections in TH1 illness after viewing these presentations given at the conference. I just wish there was a quick fix to autoimmune dysfunction. 
But given the potentially serious side effects of too much treatment too fast, and the benefit of clearing all possible infections as completely as possible, it just does not make sense to cut corners. I guess I will just need to have patience with the recovery process.
Best regards to all,
Sunset 
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FM, CFS, migr HA, low adrenal, 11/2007 1,25D70, 25D48, 7/2008 25-D 21 ng/mL, 11/2008 25-D 22 ng/ mL. olmesartan 40mg po & 20mg SL Q4H, milk thistle, quercetin, NoIRs, limited lite exp, 22% zinc sunscreen,cover up.
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Martin78
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Posted: Fri Oct 17th, 2008 22:17 |
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Hi
I have tried to download the transcripts to my computer so that I can email them to a rheumatalogist of mine, but I am experiencing problems.
I have searched the ARF site, but I cannot find a site where all the transcripts (Marshall, Blaney, Ames, Perez) are collected together.
I have also tried the links in this thread, but with various luck.
Are there any site where all the transcripts are collected together to download?
When I open Perez' transcript it dosent open in the "full adobe picture" with a save-button, when i press the mouse button the pages turn to the next one, but i cannot find a way to save the actual pdf. This is however not a problem with Blaney's transcript.
Can someone please direct me to a page where I can find links all the transcripts (at the same page) and where they can be opened in adobe where the "save file" function is enabled?
Thank you very much!
I really think these transcripts are very valuable as I find many doctors dont have speakers (!) on their office computers and cannot watch the presentations.. further its easier for them to bring the transcripts home to read aswell
I cannot wait to email Perez' transcript to a stubborn rhemautaologist as RA patients are very well represented in the studyresults he is presenting
BR
Martin
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Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
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paulalbert
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Posted: Fri Oct 17th, 2008 22:20 |
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With the exception of just a couple transcripts, we're pretty much done with the publications and presentation section of our searchable wiki. Have a look.
And if you're just interested in transcripts of Congress on Autoimmunity, check out that tag.
For the record, some of this text was extracted my emailing it to myself through gmail and viewing as HTML.
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Ron
Member in Phase 2
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Posted: Fri Oct 17th, 2008 22:23 |
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Martin,
Try right-clicking the link to the pdf file. Should work.
Ron
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Dad with RA, MP 01/08| 25D 16.8| Apr08 25D-7.1 Sept08 11.6| oxycodon, NoIRs, limited outings covered up
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Martin78
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Posted: Fri Oct 17th, 2008 22:31 |
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Thanks for quick replys!
Ron, I have tried to right click, I only get the possibility to save the "link" not the file...
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Paul, thanks this looks great on the screen, but I cannot find any link to actually download the transcripts in pdf format on the pages your link is refering too..
sorry, maybee I am brainfogged, but what I am looking for is just a site with the same kind of links that is in this thread for all the transcripts... that opens them in adobe and lets me save them to my computer so I can email them...
I am sure more people will find this helpfull as I believe many share my strategy of distributing these transcripts one by one.... (to not overwhelm our poor "specialists"....)
BR
Martin
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Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
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paulalbert
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Posted: Fri Oct 17th, 2008 22:37 |
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Martin,
Why do you need a PDF if you have a perfectly formatted web-based document - one to which you can easily email a URL? PDFs are antiquated technology from an unreliable time. Try printing it out. It looks pretty good. So long as you're connected to the Internet, you're good.
But... if you really want a PDF, I will email you one. If you have a Mac (I assume you don't), it's just a couple clicks.
Paul
Last edited on Fri Oct 17th, 2008 22:39 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Martin78
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Posted: Fri Oct 17th, 2008 22:48 |
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Paul
Because I think the persons I plan to email it too is still stucked with "antiquated technology from an unreliable time" in more than one respect  Hence pdf. documents might just be the media they are comfortable with...
Even if it does looks good after printing it out from the screen, I think the "target receivers" might be more comfortable with a document, rather then just an url to another "crazy web-site on the internet"...
But... what ever, it was just a request... allthough my experience tells me that what one person might desire also applies to others.
BTW: I have had a peak at your new project, wow!
All the best, Martin
you are right: I dont have a mac
Last edited on Fri Oct 17th, 2008 22:49 by Martin78
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Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
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Dr Trevor Marshall
Research Team
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Posted: Fri Oct 17th, 2008 23:05 |
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Martin,
I use Firefox as my browser
http://getfirefox.com
When I right click over a link I get the choice to "save link as" which means it will copy the contents of that link to disk.
"Copy link location" means it just copies the URL of that link to the clipboard.
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Martin78
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Posted: Fri Oct 17th, 2008 23:10 |
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Dr, Marshall
I also use Firefox (just started), now I have been able to download and save Blaneys transcript following your instructions. Thank you.
Where can I download the other transcripts aswell?
Anywhere where all 4 transcripts are available in the same post? or website?
THANK YOU
Br
Martin
I also managed to download Perez' transcript (allthough i got some strange message from adobe (which I tried to print screen into this post (with no luck i think)... I think its something about the programme trying to automaticly go into full screenb mode or something..
are Yours and Ames' also available in this thread orsomewhere else?
Last edited on Fri Oct 17th, 2008 23:15 by Martin78
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Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
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Dr Trevor Marshall
Research Team
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Posted: Sat Oct 18th, 2008 04:18 |
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Amy's and my transcripts should be available in a week or two.
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paulalbert
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Posted: Sat Oct 18th, 2008 04:28 |
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Amy's transcript:
http://mpkb.mp-dev.com/doku.php?id=home:publications:proal_congress_on_autoimmunity_2008
Minus the final sentence.
PaulLast edited on Sat Oct 18th, 2008 22:23 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Martin78
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Posted: Sat Oct 18th, 2008 10:25 |
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Thank you
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Sjøgrens - Fatigue "B-sxs" wt loss itch night sweats pain ancle/legs/chest irritation depression hypercalcemia 125D98 Ph1Apr08 Valium 25D56 (April08) ON BREAK UNTIL JAN/FEB 09
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Robertrr
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Posted: Sat Oct 18th, 2008 18:56 |
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Hmmm, I use firefox...and get a message that says "topic does not yet exist" at the web page. This is on Amy's presentation. Any magic words I need to use :-) ?
Robert
Last edited on Sat Oct 18th, 2008 18:56 by Robertrr
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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