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Kas
Member in Phase 2
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Posted: Sat Aug 9th, 2008 21:58 |
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Just heard that comedian Bernie Mac, who thought he was in remission from his sarc, died of complications from pneumonia at age 50. Really sad and a real loss.
Very little was said re sarc by the doctor interviewed about the disease. I wished Dr M could have called in to give the real facts.
Hopefully, his legacy will be that sarc will now be afforded more media attention and research - or is that dreaming?
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Knochen
Advocate
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 358 |
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Posted: Sat Aug 9th, 2008 22:06 |
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Have no illusions. Any comments we might make will be lost in the noise of other people touting wheat grass high colonics and crystal energy. The media circus will be in full spin mode here. Concentrate on getting well yourself and forget about saving the world until you are better. Let Trevor make his professional presentations to professional audiences, that's the only way this is going to get any traction.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Deb Grabetz
Advocate
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Posted: Sun Aug 10th, 2008 13:42 |
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Knochen wrote: Have no illusions. Any comments we might make will be lost in the noise of other people touting wheat grass high colonics and crystal energy. The media circus will be in full spin mode here. Concentrate on getting well yourself and forget about saving the world until you are better. Let Trevor make his professional presentations to professional audiences, that's the only way this is going to get any traction.
Hi Knochen!
For me, I would just like these diseases to be more validated. I say this, because , so many of us struggle with family members, friends, who don't recognize the level of illness we are at and expect so much more of us. Some are not validated in the workplace. Relationships are damaged because of ignorance about this disease. Others do not receive medical benefits that would not be questioned if the word cancer was involved! This leaves so many people, who may not be wise enough to choose to be treated with the MP, or unaware of it, so vulnerable. Most of us "look well" and are literally dying inside.
Recently I had to write in to NBC out of Dallas to correct the spelling of Sarcoidosis as it was reported in an article about Bernie Mac as "carcoidosis". The station manager was awesome and also promised to contact AP, where the article originated. She told me she was "unaware" of the illness and apologized for not catching the mistake. Maybe I'm a dreamer too (!) but to put into print that BM's death from pneumonia had nothing to do with his disease, is just stupidity and some things need to change.
You are so, so right, Trevor will be the one to eventually blow the lid off of the ignorance, that is out there regarding treatment (won't that be the finest day ever) but in the meantime I'll keep talking about this disease to anyone who will listen!! ...and I'll keep emailing the media...!
There is a free social network specific to Sarc based out of the UK, that had banned discussion of the MP. Why was the MP banned? Because there were a couple people who in my opinion, felt threatened by the work that Trevor has done. In fact one of these people had been banned from the MP site for his *vocal* attitude and rightly so. He is a self appointed Sarc specialist as someone once put it to me!! Anyway, there has been a change of site managers. He has been very gracious in working with me to open up a private group...which is publicly accessible to anyone who wants more information about the MP... The group is titled "Facts About the Marshall Protocol". There I post my progress on the MP and any other information that might be helpful to those interested in the MP research. At least I now have a voice!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Sun Aug 10th, 2008 13:48 |
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Here is a trifold brochure the Foundation put together in 2004. You can print it on both sides of a piece of paper and distribute it, if you like. All of the original 2500 pieces print run have long since run out 
http://autoimmunityresearch.org/sarcoidosis.pdf
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Deb Grabetz
Advocate
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Posted: Sun Aug 10th, 2008 13:54 |
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Thank you Trevor! My next doctor visit, I'll be sure to have a stack of these printed and ready for display in his office, as he is also a huge supporter! Why not start here? With each member on MP printing and doing the same.
If anyone does not have access to a computer, please PM me. I would be happy to print and mail these to you for distribution in your docs office!
Deb
p.s. Amy's Proal's http://bacteriality.com/2008/05/07/mpintro/ was emailed to my doc. He was thrilled that I had forwarded this to him and had already passed along to a few patients. Another way to spread the word!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Deb Grabetz
Advocate
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Posted: Sun Aug 10th, 2008 15:06 |
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Great link from Amy Proal's site regarding Bernie Mac's death!
http://bacteriality.com/2008/08/09/berniemac/
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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magsmom
Member in Phase 2
| Joined: | Thu Aug 7th, 2008 |
| Location: | Oklahoma USA |
| Posts: | 44 |
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Posted: Tue Aug 12th, 2008 07:19 |
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| Access Hollywood just now 8/11 episode at 1:am cst - Bernie Mac died from complications of Pneumonia &&&& "complications of Inflamatory Lung Disease".
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Deb Grabetz
Advocate
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Posted: Tue Aug 12th, 2008 07:26 |
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Hi Magsmom,
Interestingly, I was informed recently, that this same type of public media reporting was done when Reggie White died in 2004. Speculation that he had died from being overweight and sleep apnea made the news. When the autopsy report came out it changed things. He clearly had passed away from Sarcoidosis damage to his heart, (in the area that carries electical impulses making the heart beat), lungs and kidneys.
Last edited on Tue Aug 12th, 2008 08:00 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Knochen
Advocate
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 358 |
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Posted: Tue Aug 12th, 2008 19:56 |
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Here's another "Sarcoidosis has no cure" story for you, if you want to follow up.
http://www.chicagotribune.com/features/lifestyle/health/chi-sarcoidosisaug12,0,5966562.story
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Deb Grabetz
Advocate
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Posted: Tue Aug 12th, 2008 21:05 |
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My daughter called to tell me that Sarcoidosis is in the Top Ten on the Yahoo search today at No 7.
Today's Top Searches on Yahoo:
Today's Top Searches
- [url=http://www.yahoo.com/r/dy/*-http://search.yahoo.com/search?p=Sarcoidosis&cs=bz&fr=fp-buzzmod]Sarcoidosis[/url]
now=new Date;
t10=now.getTime();
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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edj2001
Member in Phase 3
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 148 |
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Posted: Wed Aug 13th, 2008 05:05 |
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The Chicago Tribune health writer that has been authoring the articles on Bernie Mac has established a page allowing people with sarc to post comments. I have posted my comments that are currently being reviewed by their moderators. Here is the link:
http://newsblogs.chicagotribune.com/triage/2008/08/readers-write-i.html?cid=126228056#comments
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph|digitex 0.125mg q24h propafenone 150mg q8h armour 60mg q24h proscar 5mg q24h Guaifensin 600mg qid Aspirin 81mg q12h |1,25D=50 (10/05), 25D=7 (4/08)| avd l&D
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Deb Grabetz
Advocate
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Posted: Thu Aug 14th, 2008 15:03 |
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Three different blogs appear with reference to the Marshall Protocol as of this morning in the Trib;
Toni, Gene Johnson and callmeamigo
http://newsblogs.chicagotribune.com/triage/2008/08/readers-write-i.html
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Thu Aug 14th, 2008 16:35 |
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Not one of the blogs has mentioned any of the scientific conferences we have presented our work at, or that I am chairing a session at the huge upcoming Autoimmunity Conference in Portugal.
If I was reading the comments about "Marshall Protocol" I would assume it is just another one of those Goji-juice scams. Especially if I was also being told that by the Sarcoid Pulmonologists.
Judith has not called me. If she writes about the Marshall Protocol I have little doubt it will be to express pity for you poor people who have been so sorely misled by an obvious quack.
-------------------
Here are some links giving better background for Journalists:
6th Intl Congress on Autoimmunity, Porto, Sept 2008
http://www.marshallprotocol.com/forum39/12376.html
"Days of Molecular Medicine" Karolinska, April 2008
http://www.marshallprotocol.com/forum39/11385.html
"Defeating the Diseases of Aging," UCLA, June 2008
http://www.vimeo.com/1268542
My AAEM 2006 presentation is on YouTube
http://www.marshallprotocol.com/forum39/10342.html
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edj2001
Member in Phase 3
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 148 |
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Posted: Thu Aug 14th, 2008 21:47 |
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I have sent two detailed private email messages to Graham giving explanation and links to the science of the MP including the links you list above. She responded to my email this AM as follows below.
Gene
Quote:
“From: Graham, Judy E. [mailto:JeGraham@tribune.com]
Sent: Thursday, August 14, 2008 9:56 AM
To: Gene Johnson
Subject: RE: Idiopathic chronic disease and cell wall deficient bacteria the Marshall Protocol
Thanks. Several people on the Marshall Protocol have contacted me and urged me to write about it, as you have here.
Best wishes,
Judy Graham
Chicago Tribune
jegraham@tribune.com”
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph|digitex 0.125mg q24h propafenone 150mg q8h armour 60mg q24h proscar 5mg q24h Guaifensin 600mg qid Aspirin 81mg q12h |1,25D=50 (10/05), 25D=7 (4/08)| avd l&D
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Deb Grabetz
Advocate
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Posted: Thu Aug 14th, 2008 21:58 |
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Just checked the Trib site and all the links are now posted along with my
personal post in the Trib blogs! Thanks Trevor for the helpful info!
http://newsblogs.chicagotribune.com/triage/2008/08/readers-write-i.html?cid=126409844#comments
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Thu Aug 14th, 2008 23:04 |
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Thanks, everybody. I think there is enough posted there for now to numb the mind of any poor sarcie, so lets lie low for a while and let the Trib mull over the citations...
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Knochen
Advocate
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 358 |
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Posted: Fri Aug 15th, 2008 01:04 |
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I see there is a nice snake oil salesman there now. What a parasite!
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Dr Trevor Marshall
Research Team
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Posted: Fri Aug 15th, 2008 02:10 |
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Knochen
The guy says: "I have absolutely no sings of Sarcoidosis"
Well, there is one right there - dyslexia
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Knochen
Advocate
| Joined: | Thu Feb 23rd, 2006 |
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| Posts: | 358 |
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Posted: Fri Aug 15th, 2008 02:47 |
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Maybe he just means he doesn't sing about it. I know I wouldn't! 
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Deb Grabetz
Advocate
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Posted: Fri Aug 15th, 2008 11:51 |
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...and the post right after the "snake oil", Renata, is researching the Marshall Protocol!!!
It seems that those who suffer with sarc (and other illnesses) become more agitated with those who say they have that *quick fix*. There is a sarc site I follow out of the UK, where I've opened up a private group, where others can come into and discuss the MP. There was a gal who got on this site about a month ago with the
*Dr. Suess Juice* (i like to call it that). People on this site are all sarcies and they just ate her up alive and spit her out. It looked like at some point she got someone to sign up just to help defend her and everyone caught on to that too...she has since disappeared.
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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