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jack
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| Joined: | Mon Sep 13th, 2004 |
| Location: | Canada |
| Posts: | 27 |
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Posted: Tue Mar 15th, 2005 23:35 |
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I must agree the conferance was very well organized and well presented but a little boring.Megs hat added a little flare to Sunday! Dr. andrew Wright had an excellent exhibit, but no answers( no commitment to MP in personal conversation). Dr. Lida Mattman gave the expected university lecture, but when I asked her the most probable cause of me/cfs she stated it was candida. I told her I was treated with anti-fungal and she stated it was not long enough!
I have 180 days logged on the MP, phase 2 Dec26/04 and have been ill for 179days.I went to Chicago to find the will power for the next 180 days and also to provide my family with hope.I believe, they believe! I am very exhausted from the travel but it would appear the MP is the only game in town with any odds, so here goes 6 more months. Not for the faint of heart.
Regards; Jack
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25d--40.6; 1-25d--29.61(not froze) me/cfs. Sx-10,1998. Dx. 2002.Disabled 07,2003. 51YR. Male. Early dx included interstial cystis,IBS,myofacial pain syndrome, depression, etc, etc, etc.Have classic symptoms ie; post-exertional malaise and fatigue,sleep
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CLefelt
Member in Phase 3
| Joined: | Sun Oct 24th, 2004 |
| Location: | New Jersey, USA |
| Posts: | 318 |
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Posted: Wed Mar 16th, 2005 13:56 |
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Though I was too sick to attend, I am enjoying reading everone's comments about the conference. I am disappointed, however, because I'm not seeing any nation-wide coverage. Were there journalists present? Photographers?
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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Betty G.
Member
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Posted: Wed Mar 16th, 2005 16:49 |
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| Reenie, thanks for taking the time to tell me the handouts given were those from this message board. Betty G.
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res MP; dx 7-12-04 lyme(34yrs); 1-2-04 diabetes2, FMS-CFS34 yrs; IBS; OA; osteop, gerd; 12/04 sleep apnea/restless leg; D,25=21; 1-05 D,125=20. CRP 3.1 Meds: diflucan,biaxin & doxy + benecar 40 mg/day, synthroid, zoloft, baclofen, NOIR ambers 2-10%outside
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Mar 16th, 2005 17:49 |
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Jack,
I am sorry I didn't get much time to talk with you at the conference. I recall that we bumped into each other when my mind was a hundred miles away, dealing with some hassle or another 
The conference was Lida's first real exposure to what we have been doing, and my first exposure to the amazing range of work that she herself had done (I had read her book, but her presentation covered a much wider range than that).
Similarly, although I have had many conversations with Dr Andy Wright, it really is hard for somebody to understand the degree to which we have tamed these diseases, until one discusses it face-to-face with the recovering patients.
I hope that you yourself start to see improvements soon, it is always easier to keep motivated once you start to see the light at the end of the tunnel
..Trevor..
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Ival
Moderator
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Posted: Thu Mar 17th, 2005 00:40 |
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I can not thank the staff of autoimmunity research foundation enough for the conference. I could not believe the talent that was in the room. The hormone chart sure seem to bring a lot of interest to the doctors .I brought the hormone chart to my G. P. doctor and the first thing he asked me was where I got it. I told him at the conference. He asked if there was going to be another one.
He left the room and went for his chart he'd been working on. And started to compare them he said the chart was the best one he'd ever seen. He has been helping on a different protocol for rheumatoid arthritis. To make a long story short he is willing to try the Marshall protocol. As long as I start slow on the benicar before moving at that high level. I told him I did not want to start on it until he fully understood the protocol. I have the phone number and e-mail address to give him my question is which is the best way for him to do it.
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MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 47
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Thu Mar 17th, 2005 00:55 |
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Hi Ival,
If you can get your Dr to join the Med Pros Forum, he will be able to take part in more exchange with Dr M and the other Med Pros using the MP.
About our Private Section for Medical Professionals
If your Dr would only care to call or em Dr M, he can reach him both ways.
PS I'm glad others like Dr M's "Hormone" slide as much as I do. It's my favorite. 
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Foundation Staff.
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| Joined: | Sun Jul 11th, 2004 |
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Posted: Thu Mar 17th, 2005 02:25 |
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Jack,
We knew that for some people attending the conference there might be "boring" portions, but it is important to always cover the basics to ensure everyone has those down. In addition, we had both laypeople and health professionals who attended the conference to investigate using the MP. I hope you found the boring portions forgiveable, as others found portions of the conference technical and complicated.
We tried to have something for everyone!
Belinda
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Thu Mar 17th, 2005 02:58 |
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To: Barney
Thanks, Barney, for your wonderful description of the conference. I really got a feel for what transpired. I'm delighted that so many people felt well enough to go.
To: Anyone
What is this "hormone chart" that people are mentioning?
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Mar 17th, 2005 03:08 |
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There is a copy of the hormone chart at:
http://autoimmunityresearch.org/hormones.pdf
..trevor..
Download Adobe Acrobat Reader Link
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Jill
Guests visiting Phase 1/2/3
| Joined: | Sat Jul 17th, 2004 |
| Location: | Idaho USA |
| Posts: | 130 |
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Posted: Thu Mar 17th, 2005 03:57 |
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I'm enjoying everyone's comments on the conference. Because I could not afford to attend, both health and financial reasons, I look forward to the tape, and have a couple questions:
1. Will it be made available on VCR for those of us who don't have a DVD player?
2. will it include all of the presentations? There are a few I am particularly interested in (Dr.Marshall, Dr. Mattman, for example)
I really am looking forward to it. My ophthamologist asked me to send information to him today, and it might be nice to give him the tape as well as the written info from the MP site
thanks
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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mozart
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| Joined: | Wed Mar 16th, 2005 |
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Posted: Thu Mar 17th, 2005 04:00 |
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jack wrote: Dr. Lida Mattman gave the expected university lecture, but when I asked her the most probable cause of me/cfs she stated it was candida. I told her I was treated with anti-fungal and she stated it was not long enough!
Can someone say more about dr. mattman believing CFS is largely caused by candida? Why do you think she didn't mention this at the conference. I am very interested, because I'm not sure if my problem is bacterial or fungal, and I'm afraid to provide fungus an opportunity to flourish while administering abx.
I'd appreciate any input on this. Thanks,
Mo
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Mar 17th, 2005 04:07 |
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Jill,
The problem is that the DVDs will have about 12 hours of material on them. We can fit that on 2 DVDs but would need about 6 video tapes.
Mo,
Lida didn't discuss anything but bacteria with me, and I sat with her during the banquet.
..Trevor..
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jsandman001
Member in Phase 2
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Posted: Thu Mar 17th, 2005 04:35 |
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Just to kind of back up what Dr. Marshall said. When me and my wife were talking to Dr. Wright we were sitting next to Dr. Mattman and her daughter and Dr. Wright passed the photos of he had of L-Form bacteria in CFS patients blood and he asked Dr. Mattman what she thought that was and she said its obviously L-form bacteria.
Just my 2 cents
James Sanders
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CFS, Lyme, Colitis,25D=12,6/30/2008, MP1/07, MPh2 10/07, restart Ph1 01/08, klonipin, Zyrtec, Asacol, NoIRs, cover up, low lux home
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Jill
Guests visiting Phase 1/2/3
| Joined: | Sat Jul 17th, 2004 |
| Location: | Idaho USA |
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Posted: Thu Mar 17th, 2005 04:37 |
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Trevor,
12 hours sounds like heaven. I'll either be happy to buy 6 videos (or for the same price, go buy a DVD player). 
I guess I misunderstood. Did your conversations with her reveal anything you feel comfortable summarizing here? I've ordered her book on interlibrary loan, and am hoping to be able to understand her theory. It sounds like her theory supports yours, without previous collaboration. Not serendipitous, just good science converging.
Whatever form I can get the conference , I look forward to understanding more of the MP.
I don't think my regular doc has joined the medical list, but my ophthamologist requested information today. I think my eye problems in 2 years may resolve with MP, and prove some interesting things in that line, too. Wouldn't that be fun?
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Mar 17th, 2005 05:29 |
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Jill,
Lida, along with Alan Cantwell, Emil Wirostko and Virginia Livingstone-Wuerthe all explored the CWD bacteria in Th1 diseases long before I came on the scene. My contribution was to supply the missing pieces to the puzzle - Angiotensin II and 1,25-D. And also to use modern molecular medicine to interpret and validate their observations. Oh, and also, I guess, to understand how the Internet could bypass the "status-quo" medical establishment that had stalled publication of their discoveries for nearly five decades...
Also at the conference was Dr Harold Clark, a close colleague of Dr Thomas McPherson Brown, and also Dr Millie Coker-Vann, who ran Dr Brown's lab. Millie reassured people (you will see her on the DVDs) that her experience is that RA patients take 2-5 years to recover (using the Brown protocols), and that there is no point in being impatient...
I have seen DVD players on sale for about $39, and honestly, I think that would be cheaper than it would cost me to get the tapes duplicated for you
..Trevor..
ps: some of Alan's papers (and photos) are online at http://JOIMR.org
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Jill
Guests visiting Phase 1/2/3
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Posted: Thu Mar 17th, 2005 05:53 |
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Hey Trevor,
I'm so amazed at your own contribution to this mix. I look forward to seeing the work of other scientists, (thanks for the URL, I'll check it out right now) but I have to say, but for your insights and also but for the internet, I'd still be going down into oblivion. Thanks. Without all of that, I'd be dead before this all hit the mainstream. Although that could still happen, it's not without a fight, by all of the gods! I know that using the internet is risky for scientists, but we are all happy you did.
I agree, I'll invest in a DVD player Join the 21st century. Some day with MP, I can go back to work and live and afford a life again, eh? I have noticed they are coming down in price. thanks again
Any estimate of how long the DVD protuction might take? We are all trying to be patient, too
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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Jill
Guests visiting Phase 1/2/3
| Joined: | Sat Jul 17th, 2004 |
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Posted: Thu Mar 17th, 2005 06:00 |
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I tried to follow the hormone chart link, but only could get the title. Apparently admin tested and it ran, is this a problem with my own computer? I'm not sure how to deal with it. I have an old 486 Windows 95 computer that will only load Acrobat 3. Probably not advanced enough to read this? Any computer wonks out there? Is there another way to see this information? Thanks in advance
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Thu Mar 17th, 2005 06:04 |
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Hi Jill,
Did you know that Dr M helped develop the internet? As Meg said in his intro, (which I'm sure will be on the DVD) 'yes, he did, he really did.'
Maybe that's why he's not afraid of it, like some folks are.
PS I don't know how long the DVDs will take, but Dr M is currently working on some of the audio portions now. Stay tuned...
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Mar 17th, 2005 06:05 |
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Jill
Have you tried to Download the latest FREE >> Download Adobe Acrobat Reader Link
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Jill
Guests visiting Phase 1/2/3
| Joined: | Sat Jul 17th, 2004 |
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Posted: Thu Mar 17th, 2005 06:16 |
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No, didn't know Dr. Marshall helped develop internet. I'm an old fogey just learned to use the internet about 1995, so I remember when the wonks thought all this "use" would inundate the whole system. Funny now! We are all freed by this new medium.
All I can say is "yay , team". Isn't it great to be able to share all of this information now?
I'll try to be patient for the conference DVD.
In answer to Aussie Barb, I can't download an updated version of acrobat because my computer is so old. I may have to find some way to buy a new computer, as well as a DVD player. Wow. This technology never stops. Remember when the wonks thought we'd live in a paperless society? Not unless we are willing to keep changing the format of our data. Onward and upward.
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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