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NickBowler
Member in Phase 3
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Posted: Fri Jun 20th, 2008 09:45 |
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Amy,
Yes they didn't seem to post properly. Here they are again, if you can move them then please go ahead !
http://en.wikipedia.org/wiki/Lectins
http://www.dadamo.com/wiki/wiki.pl?action=browse;oldid=Lectin;id=Lectins
Nick
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Sarcoirodis CIDP, MP start 11/07, NoIRs, 02/08 25D-8, Ph3 since 07/08|
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Ames
Member in Phase 3
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Posted: Wed Jul 2nd, 2008 18:06 |
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Hi!
Just wanted to let you know that I just put up a new interview on Bacteriality. I spoke with Bonnie B who has recovered from Lupus and Sjoren's Syndrome thanks to the MP.
http://bacteriality.com/2008/07/02/interview23/
I also had a great time at the "Understanding Aging" Conference. Once again, I was delighted to see that nearly everyone at the Conference was very interested by Dr. Marshall's work. I look forward to writing more about the Conference soon on Bacteriality. In the meantime I am still in California visiting family.
Best,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Member in Phase 3
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Posted: Sun Jul 6th, 2008 15:00 |
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Hi,
I'm gathering my thoughts on the Aging Conference into an article, but I'll be putting up a few other articles while the video footage from the Conference is being completed. Today I just put up a short piece about the hormone oxytocin and its relationship to our moods and phobias:
http://bacteriality.com/2008/07/05/oxytocin/
Best,
Amy
PS Also, Paul revamped the "search" feature for the site using a Google custom search engine, so it's much easier to find relevant articles. Thanks Paul!
Last edited on Sun Jul 6th, 2008 15:15 by Ames
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Member in Phase 3
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Posted: Thu Jul 10th, 2008 01:24 |
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Hi!
I finally got around to putting up a piece where I reflect on the Aging Conference. Here it is:
http://bacteriality.com/2008/07/09/aging08/
Best,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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jcwat101
Research Professional
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Posted: Sun Jul 13th, 2008 01:16 |
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Great article, Amy. I had a lot of the same thoughts as you did during those talks and you did a great job of explaining what was presented and putting it into a context that makes a lot of sense to us MPers.
I would also add that I was interested in Zheng Cui's talk and one or two others, which showed the previously over-looked importance of the innate immune system. Cui had a lot of video showing the power of the innate immune system against cancer and I spent quite a while chatting to him about the MP while in line for lunch one day.
Joyce Waterhouse
Last edited on Sun Jul 13th, 2008 01:17 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Ames
Member in Phase 3
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Posted: Sat Jul 19th, 2008 21:51 |
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True Joyce,
The fact that Dr. Cui's talk focused on the importance of the innate immune system was encouraging. It's cool you got to talk to him...I didn't get a chance...
I'm also writing to let you know there's a new interview up on Bacteriality. I spoke with Gene Johnson. His story is an interesting one because while he started the MP for sarcoidosis, he ended up using it to treat his bladder cancer as well. I think his story is a must read for anyone with cancer, in no small part because (as Gene realized) some of the drugs used to treat cancer actually have negative effects on the immune system. So in my opinion, it's important to avoid one drug in particular and instead work to strengthen the innate immune response towards possible cancer-causing bacteria with the MP.
Gene's sarcoidosis symptoms have diminished substantially and he has been cancer free for over a year.
http://bacteriality.com/2008/07/18/interview24/
Best,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Member in Phase 3
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Posted: Sun Jul 27th, 2008 23:49 |
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Hi,
Just letting you guys know that I put up a new article on Bacteriality. It's about the Human Microbiome Project. Scientists associated with the project are using new molecular tools to sequence bacterial genomes. Hopefully their data will allow us to better characterize the microbiota we know cause chronic inflammatory disease.
http://bacteriality.com/2008/07/27/microbiome/#more-222
Best,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 658 |
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Offline
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Posted: Sat Aug 9th, 2008 19:01 |
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Hi,
This is Amy accidentally logged in under Paul's account.
Many of you might have heard today that comedian Bernie Mac died. His publicists will tell you he died of pnuemonia but he's had sarcoidosis since his 20s. His death is a prime example of how deadly sarcoidosis can be and how the medical often community fails to acknowledge this reality.
I wrote a Newsflash about the incident:
http://bacteriality.com/2008/08/09/berniemac/
Amy
Last edited on Sat Aug 9th, 2008 19:13 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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Freddie Ash
Member in Phase 3
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Posted: Sat Aug 9th, 2008 19:42 |
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HI AMY
This is Fred in WV. Thanks for the great atricle. What you said in the article about Sarcoidosis killing more that reported is what I got after my doctor about back in the mid 1980s. I had a friend with sarc that died while he was in the hospital with pnuemonia and kidney problems. I told the doctor that they most likely put that my friend died of kidney failure or pnuemonia and never said anything about the sarc. I said that no wonder they said that only 200 died a year from Sarcoidosis. My doctor said I was right and it was the doctors fault that things like that happens.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3872 |
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Offline
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Posted: Sun Aug 10th, 2008 00:34 |
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The Sarcoidosis 2003 ACCESS study showed absolutely nobody in the huge cohort with a sarcoidosis dx went into any kind of remission. Hard to believe Bernie's sarc drs from Chicago were not aware of that detail.
What does seem to happen, to avoid identifying death specific to Sarc or not is not clear, is a shell game naming-convention that defers to subcategory or a generic catch-all category at the time of death. Pneumonia, COPD, kidney and/or heart failure seem to be quite popular.
No matter what it is called, his death is still tragic. Death is death, regardless of who you are. Even more sad too, knowing that any Sarc-related death at this time might have been averted with the MP.
Maybe his family will want to ask his doctors some pointed questions in a couple of years, when it is easier to focus on who knew what and when.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Bane
Member
| Joined: | Sun Jan 27th, 2008 |
| Location: | Norway |
| Posts: | 5 |
| Status: |
Offline
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Posted: Sun Aug 10th, 2008 16:46 |
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In this Norwegian note its actually bein put weight on the fact that he had sarc, and lookin at his fingertips it seems he had digital clubbing aswell.
http://www.kjendis.no/2008/08/09/543102.html
on digital clubbing
http://www.turner-white.com/pdf/hp_sep03_club.pdf
Another One
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Oral Lichen Planus(mild)/Clubbed Finger (digital clubbing)|125D53|18th Feb. 25D14
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 658 |
| Status: |
Offline
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Posted: Mon Aug 11th, 2008 02:15 |
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I've gone ahead and "Dugg" Amy's article about Bernie Mac's tragic death and if you have the ability, I ask you to do the same. The more people who Digg an article, the more likely it is that it will show up in a list of recommendations for webpages that a great number of people will read.
How does one Digg an article? Simple (sort of).
1. Register at digg.com
2. Go to Amy's article.
http://bacteriality.com/2008/08/09/berniemac/
3. At the top, click on "share this."
4. Select Digg.
5. Click on the button on the left, which says "Digg it."
If you have any trouble, please let me know.
Thanks!
Paul
Last edited on Mon Aug 11th, 2008 02:30 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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Dr Trevor Marshall
Research Team
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Posted: Mon Aug 11th, 2008 02:58 |
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After you get taken to the Digg site, you still have to click on another "Digg It" (the one underneath the number of diggs)
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Lee
Member in Phase 3
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Posted: Mon Aug 11th, 2008 14:11 |
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Thanks to everyone for all of this info!! May Bernie rest in peace. Amy and Paul we will be diggin' it .... BTW ....Jeff ....I Love You Too!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Timber
Member in Phase 2
| Joined: | Tue Nov 8th, 2005 |
| Location: | |
| Posts: | 33 |
| Status: |
Offline
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Posted: Mon Aug 11th, 2008 15:09 |
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Yes Amy, a very well written article. We who have Sarcoidosis know it was the pnemunia that's blamed, but an otherwise healthy 50 year old male would not usually succumb to this, if not for the weakened condition of his lungs from Sarcoidosis. May he and his family find peace. I too wish the media would cover this more accurately and not down play the Sarcoidosis impact here.
Perhaps someone should contact People and all the other magazines that will no doubt be writing this up for their next publication?
Best to all - Timber
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Sarcoidosis/lungs, skin, 125D30, 25D13(09/05), MP 10/05, ModPh2 5/07, MP2 12/07, NoIRs, cover up, lite exp r/t to work, low lux home
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 658 |
| Status: |
Offline
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Posted: Wed Aug 13th, 2008 16:45 |
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An announcement of sorts. Remember Amy's "Overview of the MP" video? It's an 85-minute presentation on the MP, and it reviews, among other topics, the science supporting the MP. The presentation can be found here:
http://bacteriality.com/2008/05/07/mpintro/
It's still on the web. For me, that remains the best way to view this presentation.
But, some of you have said it would be more convenient to watch this on television. It took a while but we finally have a DVD you can play in a typical DVD player.
Gene (edj2001) has very graciously volunteered to burn and send DVDs to people who want them. The cost, including shipping and handling, is $4.
For the sake of convenience, the easiest way to do this is to send $4 per DVD via PayPal. For those who are unclear about PayPal, it's fairly easy to use. Once your account is set up, all you have to do is say "send $4 to a particular email address."
I'll let Gene decide if he wants to put up his email address here. In the meantime, you can PM him and he'll tell you what it is.
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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edj2001
Advocate
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Posted: Wed Aug 13th, 2008 17:13 |
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Thanks Paul,
I have added my email address to my profile.
Gene
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| digitex propafenone Armour proscar Guaifensin Aspirin| 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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edj2001
Advocate
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Posted: Thu Aug 14th, 2008 19:23 |
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I have just completed the first batch of DVD orders and they will go out in tomorrows (8/15) USPS so be on the look out for them. Thanks for your comments of encouragement.
Also, since I am just getting started, please alert me to any problems you have with postage, handling damage, DVD scuffing, play back quality, etc.
Personal checks are OK if PayPal is not an option.
Gene
My address:
Gene Johnson
446 Trinity Dr.
Allen, TX 75002
Phone: 469 675 1316
Last edited on Thu Aug 14th, 2008 19:27 by edj2001
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| digitex propafenone Armour proscar Guaifensin Aspirin| 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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Ames
Member in Phase 3
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Posted: Tue Aug 19th, 2008 01:19 |
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Gene - thanks so much for your help with the DVDs! By the way Gene, what protein do you code for...he he..
About a week ago I attended a three day training session at the J. Craig Venter Institute where I took a class is bacteria sequencing and annotation techniques. Although the workshop was challenging I learned a lot and got know some very interesting and intelligent people. I finally got around to writing about my experience on Bacteriality.
http://bacteriality.com/2008/08/17/jcvi/
Best,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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edj2001
Advocate
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Posted: Tue Aug 19th, 2008 03:37 |
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Hi Amy.
I think I code for the Rocky Road ice-cream suppressor gene, there is definitely a deficiency here 
I am looking forward to reading your article!
If you haven’t seen it yet, be sure to take a look at Dr. Blaney’s latest post referencing the proposed hypothesis of endometriosis being caused by Shigella infection and the method used to determine this. This technique will show bacterial DNA in human cells and continue to confirm the MP as Dr. Marshall notes in his UCLA aging presentation. Might be a good topic for an article.
http://www.marshallprotocol.com/forum11/2520-2.html
1: Med Hypotheses. 2008;70(2):239-43. Epub 2007 Sep 20. Links
Role of Shigella infection in endometriosis: a novel hypothesis.
Gene
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| digitex propafenone Armour proscar Guaifensin Aspirin| 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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