| Author | Post |
|---|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 763 |
| Status: |
Offline
|
|
Posted: Tue Jul 7th, 2009 20:23 |
|
| I always wonder if Benicar is palliating my symptoms, why then is my exhaustion greater the more Benicar I take? Exhaustion is a symptom. Logically, I'd assume the exhaustion would be lessened. Claire
____________________
34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
|
geneartemenko
Member in Phase 2
|
Posted: Tue Jul 7th, 2009 20:32 |
|
Thank You Dr.Marshall.
I hope palliative effect at Q4 40mg predominate the activating of the innate immune system, because if it is not, how I can settle my IP if I will continue take Benicar and quaifenesin doesn't make much difference so fare.
Gene
____________________
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
|
Dr Trevor Marshall
Research Team
|
Posted: Tue Jul 7th, 2009 20:47 |
|
Claire,
The extra palliation and organ protection at high doses is most noticeable once you get well along the path to recovery, and is the primary effect in Stage 5 (when immune activation effect is no longer a factor, as the body is stimulating the VDR by itself).
Gene,
Working out how to manage IP is indeed my number 1 priority right now. We have very few tools which work reliably. Sorry you are having trouble with that. My ultimate goal is to make sure that people are not allowed to get as sick as most of our current members are, but unfortunately, at this point we will just have to struggle with the hand fate has dealt us.
|
Rico
Moderator
| Joined: | Wed May 31st, 2006 |
| Location: | |
| Posts: | 325 |
| Status: |
Offline
|
|
Posted: Tue Jul 7th, 2009 21:10 |
|
| The extra palliation and organ protection at high doses is most noticeable once you get well along the path to recovery |
I can confirm that - not personally, but my wife had a difficult time with Benicar q6h initially and would be worse with q4h. Over time, she's found that q4h does alleviate IP a bit now. Even though she's still struggling, I guess it means she's well along the path to recovery, which is encouraging.
____________________
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)
|
scooker48
Member in Phase 3
|
Posted: Tue Jul 7th, 2009 23:26 |
|
Dr. Marshall and the entire team of ARF,
CONGRATULATIONS on this milestone, and I am cheering you on.
The agreement at West China Hospital will use a population of Chinese who have not been subjected to fortified "Vitamin D" in their diets, as has the population of the USA, UK, Western Europe, Australia, etc. Correct? If that is the case, will the results be helpful in establishing fortified Vitamin D as upsetting the "steady state" of the human body?
One of your greatest fans,
Sherry
____________________
Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 5/9/09 D25, D3 6; D25 D2 <4, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal.
|
Dr Trevor Marshall
Research Team
|
Posted: Wed Jul 8th, 2009 01:35 |
|
Sherry,
The Chinese diet contains a lot of fish, mushrooms and egg. I am holding back any guesses about their Vit D status until the data starts to come in from the study cohort. I am sure you understand 
UK, Western Europe, and Australia, all to varying degrees, have been exposed to the "more Vitamin D is good" pragma for some time. Sunbathing binges are common amongst their youth (Scandinavians promote Egypt as a venue for summer holidays, for example). Multivitamins are commonplace throughout those regions, and have been for decades. So I don't want to generalize until I see hard data
|
Frans
Member in Phase 2
|
Posted: Mon Jul 20th, 2009 14:50 |
|
Trevor,
I understand a press release is on the way.
I was wondering what will be studied by West China Hospital. Will they look at some of the things I sum up below?
I will sum up some ideas I have:
- will they biopsy the vertabraes that are fused together, to look for bacterial rRNA in that tissue?
- will they assess bacterial load before and during the study, in the blood, but perhaps also tissue specific?
- will they be looking at transcriptional activity, eg of VDR itself but also of other genes we now know are transcribed by VDR ? This also in blood or tissues.
Will they be doing more general studies? I mean studies like:
- letting olmesartan loose on cells in vitro to measure rate of upregulation of VDR
- perhaps look for exactly which receptor is responsible for transcribing VDR, besides the VDR itself? You mentioned the Estrogen receptor.
- from there on perhaps look which proteins are responsible for that and do genome wide screens for look-alike bacterial or viral proteins to see if there are more bacteria or viruses that can knock out the VDR ?
- perhaps do the same to find analogs of capnine ?
Best, Frans
Last edited on Mon Jul 20th, 2009 14:54 by Frans
____________________
Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
|
Dr Trevor Marshall
Research Team
|
Posted: Mon Jul 20th, 2009 19:51 |
|
We will put those on the list of things for the students at Sichuan University to be looking at
WCH has long-standing expertise in Ankylosing Spondylitis, and they have tests available to measure osteoclastic action and osteoblastic action, for example. So I am sure they are going to be able to track the cohort's progress pretty well.
They also have local support groups in the outlying regions who will be providing counselling and support-meetings to try and emulate the community spirit we formed here on the study site.
WCH is the Cochrane collaborator for Chinese evidence based medicine. They know exactly what they are doing. And their aim is to cure their patients. They gain nothing from having patients coming back to their out-patient surgeries year after year
With 4600 beds and 2.5 million outpatients a year WCH is the biggest clinical center in the world...
ps: the press release will be going out on Eureka Alert tomorrow
|
Frans
Member in Phase 2
|
Posted: Mon Jul 20th, 2009 21:18 |
|
Dr Trevor Marshall wrote: We will put those on the list of things for the students at Sichuan University to be looking at
Sounds like a plan If they need any help ... 
they have tests available to measure osteoclastic action and osteoblastic action, for example
That´s great. That way they can (indirectly) measure that lowering vitamin D actually leads to better bones Who would have thought that ...
WCH is the Cochrane collaborator for Chinese evidence based medicine. They know exactly what they are doing
If cochrane starts 'advertising' (or at least advocating) the MP in a couple of years ... wow ...
ps: the press release will be going out on Eureka Alert tomorrow
Can't wait
Some appropriate words, especially today:
It's a small step for man, .... mankind 
Frans
Last edited on Mon Jul 20th, 2009 21:18 by Frans
____________________
Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
|
bealunn
Member in Phase 3
| Joined: | Sat Jun 23rd, 2007 |
| Location: | |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Wed Jul 22nd, 2009 12:11 |
|
Bravo Trevor Marshall
Press Release
____________________
Sarcoidosis/lungs -25D 9(August07)/25D 4(July08)/25D 4(December08)/25D 5,3(October09) -Phase 1 (May08)-Phase 2 (July08)-Phase 3 (Jan09)- NoIRs low lux home limited outings covered
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 763 |
| Status: |
Offline
|
|
Posted: Wed Jul 22nd, 2009 17:52 |
|
| I'm printing this press release to give to my new doctor who is like a colt in the first 10 minutes of life when it comes to the MP. As we know, it is difficult to establish credibility with new doctors. Yay! Yay! Yay! Just maybe she'll believe that I know something of which I speak. Claire
____________________
34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
|
Frans
Member in Phase 2
|
Posted: Wed Jul 22nd, 2009 20:13 |
|
When I first read the anouncement, it brought tears to my eyes.
Biggest points to take to our docs:
- WCH, their scientists and Cochrane have implicitly gathered in MP's corner
- this should convince doc that MP's view of vit. D cannot be ALL wrong ...
- the same goes for (l-form/CWD/hard to culture) bacteria
- and perhaps even long term use of pulsed antibiotics
- not to forget the agonistic properties of olmesartan in the VDR
This, together with all those scientist that have PEER reviewed Trevor's, Amy's, Paul's, cpt Perez's, Greg Blaney's and Joyce's papers in internationally acclaimed journals, makes a hell of a convincing crowd that (new) docs should really, really, try hard to believe/trust ...
Congrats to all that have done their utmost (which is not always easy when doing MP) to get us all here.
Cheers and thanks !
Frans
Last edited on Thu Jul 23rd, 2009 00:38 by Frans
____________________
Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
|
Dr Trevor Marshall
Research Team
|
Posted: Wed Jul 22nd, 2009 20:50 |
|
Claire,
Every member should print this release out and take it to their Doctors. It is short enough for them to read, and we tried to use easily-understood language. Frans has summarized the take-home-points quite well
|
Freddie Ash
Member in Phase 3
|
Posted: Wed Jul 22nd, 2009 21:15 |
|
HI ALL
This is Fred in WV. I will be taking copies to all my doctors, 5 of them.
Thank you Dr Marshall for all you effert that you have put into all this to make it come true.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
____________________
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
|
Frans
Member in Phase 2
|
Posted: Thu Aug 27th, 2009 18:49 |
|
Trevor,
I was wondering if the trials in Bejing have already started ?
Another thing I wanted to ask is how exactly they are going to implement the MP? Expecially concerning diet low on D, NOIR glasses, avoiding sunlight etc. ?
TIA, Frans
____________________
Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
|
Dr Trevor Marshall
Research Team
|
Posted: Thu Aug 27th, 2009 19:19 |
|
Frans,
We are still working on all the details I will answer your questions in a week or three
|
Current time is 06:39 | Page:   1 2 3 |
|
