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Cocoa
Member in Phase 2/3
| Joined: | Fri Nov 17th, 2006 |
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| Posts: | 288 |
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Posted: Thu Aug 14th, 2008 09:31 |
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Hi Dr. Marshall,
Thank you for your response.
I am very happy with the MP and deeply grateful to you and the Moderators for its existence . I believe MP is the best available treatment for my condition and that is why I have embraced it. This is indicated unequivocally in my thread and I have not expressed otherwise.
I have no interest in debating the science and nor am I qualified to do so, but I am, however, very interested in understanding it as well as I can and this does not mean that I believe there are better treatments available or that I want to cease MP.
If I can't find the answers to a question on the site, I hope to be able to continue to ask questions so that I can better understand MP and continue to act as an MP advocate amongst my contacts.
In terms of your response:
1. 1015 is a great number to have in the study and I'm sure there are many others who do not post or report.
2. 16% is a significant figure. I would assume this figure would actually increase as individuals progress through the Phases in time.
3. I have seen a few individuals being told by the moderators that they are so well now that they don't need to post regularly. These individuals' progress is inspiring.
The assistance offered on the site is exceptional and gratefully received by all. I am sorry to hear you are suffering from study burn-out though this is not surprising given the rate at which you are discovering new things about the science underpinning Th1 illness.
This will surely be no consolation for you, but I am deeply grateful for your tireless efforts and for your study site.
Thank you and best wishes to all, Cocoa
P.S. It's great to see what Evelin is doing. Unfortunately I couldn't read the second article - will rely on the assistance of a friend!
P.P.S. Paul, it would be wonderful for the new site if there was a Phase 2/3 Alumni site to reflect the success of individuals further along in the treatment.
Last edited on Thu Aug 14th, 2008 09:34 by 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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Dr Trevor Marshall
Research Team
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Posted: Thu Aug 14th, 2008 14:09 |
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Cocoa said: "it would be wonderful for the new site if there was a Phase 2/3 Alumni site to reflect the success of individuals further along in the treatment"
Cocoa, there is a fundamental disconnect in comprehension between those in early phases (first three years) of the protocol and those well beyond that. Recovery from the Th1 microbiota is incremental. One doesn't merely 'regain' one's health, one finds out that they were never really healthy at all, that the state of true health is something quite unknown. Few try to describe this, they just start to live, and remain in awe of the experience
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Wojta
Member in Phase 3
| Joined: | Mon Jan 21st, 2008 |
| Location: | Czech Republic |
| Posts: | 88 |
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Posted: Thu Aug 14th, 2008 15:23 |
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2. 16% is a significant figure. I would assume this figure would actually increase as individuals progress through the Phases in time.
Cococa...Dr.Marshall wrote More than 16%...this can be anywhere between 16 and 100%. I believe it must be much higher than 16.
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Lyme, Feb08: 1,25D=43.9pg/ml, 25D=10.8ng/ml, 25D=8.7ng/ml on Jul 15 2008, Xyzal 5mg qd, covered up outside, NoIRs, no direct sunlight
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Cocoa
Member in Phase 2/3
| Joined: | Fri Nov 17th, 2006 |
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| Posts: | 288 |
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Posted: Thu Aug 14th, 2008 15:45 |
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Dr. Marshall,
Yes I have spoken to one MPer who has never felt so well in her life. If there are others like this (and there are), then their stories are genuine miracles .
Such stories are indeed awe-inspiring and surely this is reason enough to have a section for them on the site even if they're hard to describe. Our imagination can inspire us to wrap our minds around such possibilities.
Amy's story interested me in MP and ultimately stories like this could save lives. Share them with everyone I say!
Thank you for sharing part of your inspiring story above in this thread.
Best wishes to all, Cocoa
P.S. Wotja, thank you for the important correction.
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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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expate
Member in Phase 3
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Posted: Thu Aug 14th, 2008 18:00 |
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I am reading this thread with interest and do so appreciate the dialogue.
I want to reply to Paul's succinct and helpful analysis of the future of MP in terms of goals and objectives. I want to raise another area for you to consider (that Knochen touched on in addressing the role of the healthcare system) that is important. That would be practical considerations for the future of the MP that tie into ease of compliance and economic considerations.
Because treatment takes so long, is difficult to learn, and compliance is impeded in so many different arenas of life (even for people like me who are not horribly symptomatic), practical support for people on the MP regarding lifestyle issues would be most welcome.
I'm not exactly sure where I'm going with this, but ( and don't laugh), I mean, if I could go to the store and get MP brand milk, flour, bread, pasta, cereal, granola, soup, pasta sauce, shampoo, face cream, hand lotion, etc, my life would be so much easier and I would KNOW I was compliant. Trying to read small print in dark glasses and remember all the oils, folic acid etc. that you can't have...
Another example is the pages and pages devoted to eye protection and complicated descriptions of getting blanks to have glasses custom made, etc. I am lucky that I wear contact lenses so I can just throw NoIRs over them and get by without trying to figure out how to get prescription glasses made. But maybe, through the new website) if you found a cooperating mail -in optometrist that we could use who would offer appropriate frames and lenses that work for the MP AND that takes vision insurance...
And the same for clothes, scarves, hats, gloves, and window coverings, and, and, and... MP brand or endorsed, avaialbe through a "store" on the MP website would make things so much easier AND maybe raise funds.
IDK, but you have to REALLY want to do this to make it work. I know it could be made more user friendly without having a degree in microbiology.
Thanks to all of you who work ceaselessly and for all you contribute,
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member in Phase 3
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Posted: Thu Aug 14th, 2008 18:32 |
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I want to add that, given that we live in a capitalist nation, having a great idea/product/protocol isn't enough. Look at Tesla vs. Edison.
Paul Newman provides a wonderful example (good article on him in current "Vanity Fair") of how you can use commercial success through retail sales to fund good causes (Autoimmunity Research Foundation). He has donated over $250 million dollars to charity through selling quality food products with high recognition name.
Even doing something on the new website like having discrete advertisements of products (like milk of magnesia or brand name ibuprofen) that are compatable with the protocol, it does two things: one, raises money and two, informs patients on the MP that those products are fine to use.
OK, just fantasizing here.
Odette
Last edited on Thu Aug 14th, 2008 18:51 by expate
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Dr Trevor Marshall
Research Team
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Posted: Thu Aug 14th, 2008 18:59 |
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Odette,
We have avoided advertising to distinguish our work from that of the web-based quacks who sell all kinds of cure-alls. See, for example: http://stoplyme.com
As we gain mainstream scientific acceptance, we will be able to tap into the the business that is Medicine, but right now we are absolutely reliant on the donations from our members and their families/friends.
It is a chicken and egg situation - without the money we can't put on a good showing at the medical conferences, and without the acceptance we gain from the medical conferences we can't tap into the money flow. Sigh...
I have a plan for growth, and we are executing on it. Even if that may not be obvious, from time to time
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zeno_the_stoic
Member in Phase 3
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Posted: Thu Aug 14th, 2008 19:35 |
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In regard to the donation situation...
Would you consider setting up a monthly Paypal option? I could probably donate $10 or $20 on a recurring basis.
I do that as a subscription to Leo Laporte's This Week in Tech. http://thisweekintech.com
Also Leo has a podcast called
Futures in Biotech http://thisweekintech.com/FIB
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Sarc|MP-12/12/07|PI-12/30/07|PII-2/20/08|PIII-06/19/08|Dtests 12/12/07-46 pg/mL-8.5ng/mL|ibuprofen,Mucinex|covered up|
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 855 |
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Posted: Fri Aug 15th, 2008 00:10 |
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If you want to participate in the discussion about how the process for redesigning the MP site, see this thread.
Paul
Last edited on Fri Aug 15th, 2008 00:11 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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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1708 |
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Posted: Fri Aug 15th, 2008 04:52 |
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Hi Zeno,
You can make a donation any time by clicking the orange "PayPal Donate" button at the top of every page in the forum. Is there something more that could be done that isn't set up right now? I'm not sure I'm understanding your suggestion.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Dr Trevor Marshall
Research Team
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Posted: Fri Aug 15th, 2008 05:31 |
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Joyful, if you go to Leo's site he has regular deductions set up. I see what Zeno is saying, I just don't have time to chase it down right now and find out how we implement that.
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expate
Member in Phase 3
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Posted: Fri Aug 15th, 2008 07:25 |
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If we're looking to the future of the MP, I found this NPR report VERY interesting as a paradigm for how to have a broader vision. I know it's not in the same ball park, but it suggests a way of looking for commonalities that go beyond content into systems. Symbiotic relationships.
http://www.npr.org/templates/story/story.php?storyId=93605988
It reminded me of an idea I heard of 11 years ago while living in New Zealand about a universal electronic grid wherein areas of the globe where it was night could route electricity to where it was day in a continual cycle that would never stress a specific locale and thereby SAVE.
How to piggyback... but turn the tables. Take something that is entrenched and push it to a new conclusion.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1708 |
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Posted: Fri Aug 15th, 2008 07:40 |
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Dr. Marshall,
I see. Just need more funding for staff!
Odette, Has your large thinking ever got you into trouble?
I like it! 
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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expate
Member in Phase 3
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Posted: Fri Aug 15th, 2008 10:22 |
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Trouble? We'll see. So far, um, nope. Haven't been arrested yet. I just like to live life and think. Maybe I'll get into trouble someday. 
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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shegeek
Member in Phase 3
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Posted: Fri Aug 15th, 2008 13:59 |
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expate wrote:I mean, if I could go to the store and get MP brand milk, flour, bread, pasta, cereal, granola, soup, pasta sauce, shampoo, face cream, hand lotion, etc,
...
And the same for clothes, scarves, hats, gloves, and window coverings, and, and, and...
There wouldn't need to be a specific MP brand, or even specific claims. When enough of the general population comes to understand how our diets need to change (not that I'm holding my breath  ), the specific compliance factors will become selling points. (Like now, packages can say "low sugar" without saying "may help control diabetes.") When manufacturers start printing "Low D" on food packages and bragging about who has the lowest content, it will be a sure sign that we have Made It. It would start as a niche market when there is enough consumer demand.
The well-covered look could eventually become fashionable, with designers producing new types of sun blocking clothing (bodysuits, opaque body paints and so forth) that we are not accustomed to seeing now. Building on the SPF for swimsuits idea, we could see a total light blocking index for fashion fabrics. Also, magazines such as Sunset and House Beautiful might provide tips on elegantly dimming existing buildings and building new ones that follow the low light aesthetic. Again, it will start with niche markets, when enough consumers voice their preferences.
Another thing we might see someday is MP farms or spas, where those who need it and could afford it could go to have their compliance monitored by medical staff. They wouldn't need to be directly certified or carry an MP brand (they could be called "autoimmune recovery assistance", for instance), only the top staff would need to be certified or otherwise well versed in the MP.
Of course, this is all wishful thinking about the far future, after those of us recovering now have paved the way...
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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findinganswers
Member in Phase 2
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Posted: Sat Aug 16th, 2008 02:09 |
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Dr. Marshall,
How prevalent is the knowledge of how to do what you have done with computers and molecular modelling? It seems like the more prevalent this technology/software? is, the better understanding there will be for all.
Also, do you think other molecules that reduce inflammation (like some proteases) might one day be used with the MP? How hard would it be to study an enzyme's effect on the immune system through molecular modelling? It seems to me that the holy grail addition to the MP would be something that would help break down or neutralize the "toxins" produced during immunopathology, yet not inhibit the immune response. What are your thoughts on this, specifically regarding enzymes' ability to reduce inflammation, and the study of how they affect the immune system?
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Diabetes type I hypothyroid IBS ADD GAD 125D37 25D12 Ph1Sept07 Ph2Jun08 ModPh2Nov08 25D8.5 (June08) Levoxyl Lantus Humalog Cal/Mag Supp. qod NoIRs lite exp r/t work
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Dr Trevor Marshall
Research Team
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Posted: Sat Aug 16th, 2008 03:19 |
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There are very few institutions in the USA which are capable of doing in-silico work. A lot is being done Internationally. It will take a new generation of physicians, who are more capable with computers, before there is widespread understanding of the technologies we used to make our breakthroughs.
The concepts of modern pharmacopoeia will have to change. The pragma of "toxins" and "anti-inflammatories" are destined for the trash-heap/
We continue to look for ways to reduce the effect of the immunopathology, but I fear that this generation is going to have a tough time of it. Next generation, of course, will not be allowed to get so ill in the first place.
ps: I have done some enzyme modeling, it is difficult. I suspect that the panacea lies elsewhere than enzymes.
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geneartemenko
Member in Phase 2
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Posted: Sat Aug 16th, 2008 05:56 |
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Dr. Marrshall said:"We continue to look for ways to reduce the effect of the immunopathology..."
It would be correct to say ( at least partially) that, to find the ways to reduce the effect of the IP is equal to find the effective and secure ways for detoxification?
Thank you,Gene
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Lyme 05 burning&pain muscles and joints,TMJ blurring vision 125D51 25D40(Aug07) Ph1 Feb08 25D19.3(May08).Ph2(May08) 25D18.3(July08).25D13.0(Oct08).25D-11.4Dec08.25D-9.3Apr25D-11.5Jn09.D25-10,1.25d-14.4Sep09
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Dr Trevor Marshall
Research Team
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Posted: Sat Aug 16th, 2008 07:01 |
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No, the currently held concept of toxins is not well-founded in science. What is thought to be "detoxification" is just changing around the body's enzymes a little so the patient gets palliation. I am more interested in understanding the key pathways, such as the NuclearFactor-kappaB mediated cytokine pathway, and stopping the cytokines from being released in the first place.
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findinganswers
Member in Phase 2
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Posted: Sat Aug 16th, 2008 08:08 |
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Dr. Marshall,
Thank you for your response.
I just thought if any of the inflammation from immunopathology is exacerbated by cellular/bacterial debree left over after bacterial killing/apoptosis, that a proteolytic enzyme that doesn't hinder the immune response might help. However, I don't really know enough about the immune system to speculate intelligently on the subject.
So please keep up the search for the Holy Grail!
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Diabetes type I hypothyroid IBS ADD GAD 125D37 25D12 Ph1Sept07 Ph2Jun08 ModPh2Nov08 25D8.5 (June08) Levoxyl Lantus Humalog Cal/Mag Supp. qod NoIRs lite exp r/t work
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