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Deb Grabetz
Support Team
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Posted: Fri Sep 25th, 2009 17:14 |
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Karna,
Thanks for the advice. Tonight is med night (I also take mine at night, it gives me such incredible good sleep!) so I will try something like crackers, toast. I'll let you know if my reaction changes!
Be well..! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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JanEE
Member
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Posted: Fri Sep 25th, 2009 22:41 |
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Deb, I had a similar problem when I was in phase 1. I went online and looked up the meds I was on and one site said that Benicar was one of those drugs that you wanted to stay upright for a while. I've never read, or heard, anything like that since, but at the time I thought it was worth a try. As I always took mine just before going to bed also, I thought I'd try putting it into a gel cap first. While I'm not totally sure that was what did the trick, it was an instant "fix" (about the only thing on the MP that is). Maybe you could try cramming your meds into a gel cap. I did ask my doctor about it and she said it didn't hurt to take them that way.
Hope you have some luck. There's nothing worse than having your meds make you feel ill in addition to IP.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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JanEE
Member
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Posted: Fri Sep 25th, 2009 22:43 |
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I should have added that it might be good to try one suggestion at a time, so you know which one, or if both, works.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Deb Grabetz
Support Team
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Posted: Sat Dec 26th, 2009 12:10 |
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Deb Grabetz wrote: I'm posting here as I wonder the significance with this mans sarcoid combined with treatment through the years and his current battles with colon/liver cancer? Without really knowing what treatments Gilbert has pursued, I'm guessing from the excerpts I've been able to find on his books, it has been steroids but will need to confirm this.
http://www.gilbertbarrjr.com/
This morning I received a PM from another MP'er who saw on a sarc support site that Gilbert Barr Jr passed away yesterday. He was from the Southfield, Michigan area, just about 40 minutes from where we live and would be 51 years old.
I had tried to contact Gilbert when I first posted the above content but after a couple of tries, stopped emailing.
Was unable to find anything on the Internet of his passing but will update, when I'm able to learn more. Gilbert had written three books about chronic illness and also specific to Sarcoidosis.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Lee
Member
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Posted: Tue Jan 26th, 2010 20:06 |
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Does anyone know of a place I can get the information on Vit D as a steroidal and the down side of this? I have a cousin that is using high doses and brags about the pain relief she is getting. I can verbalize it and have in a very elementary fashion but she needs the cold hard facts! Maybe a study or two. Also the fact that it is addicting and closes one off as well as shutting them down. I know Dr M hinted at this lately. She has horrible bone deformities in her feet and has had 2-3 surgeries for this. She never healed right from these either. She has numerous th1 symptoms but feels that Vit D is her savior. Any ideas? Thanks!!! 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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Katezzz
registered
| Joined: | Thu Jul 9th, 2009 |
| Location: | |
| Posts: | 2 |
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Offline
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Posted: Mon Feb 1st, 2010 17:57 |
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http://bacteriality.com/2007/09/15/vitamind/#3
There are several articles on Amy Proal's site. But remember that Vitamin D proponents are filled with a quasi-religious fervor to spread the word and save the world from disease. That kind of passionate conviction is energizing. And it feels great to be part of a mission, especially when the only enemies are abstract concepts such as "ignorance" and "bureaucracy."
It's unlikely that she'll be receptive while she's experiencing benefits. If I were you, I'd briefly explain the alternative hypothesis, and mention that even though it took 20 years, the medical community reversed its stand on HRT, proving that yes, it is possible that so many experts could get it wrong.
But don't push it because she'll probably withdraw from you. When her benefits start to drop off, as they inevitably will, she might be more inclined to actually listen to what you have to say.
kate
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Lee
Member
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Posted: Tue Feb 2nd, 2010 00:40 |
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Yes ...this will take time. She mailed this weekend that her D-levels are still low and I am sure she will up her dose .... I have emailed her the address for bacteriality as well as MP info too and she said it was all "interesting". She is in denial as she thinks all her problems are from old injuries and typical aging. She and my sister are of similar mind-set and all I can do is keep chipping away ..... I will too and set a much healthier example for them "ME" .... Thanks!!! 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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Sallie Q
Support Team
| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Offline
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Posted: Tue Feb 2nd, 2010 05:08 |
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inflexible dogmatic repetition v. the scientific approach
trouble with people is they talk to doctors who have little or no science training, read gossip columns and health department bureaucratic publications and heaven-help-us-all ignorant easily propagated eMails
People rarely learn to read scientific research with any real understanding and almost never talk to real scientists, even more rarely to trained biochemists
(only to pharmacy chemists who are not trained in biofeedback mechanisms, they need to know more about short term reactions to doctor prescriptions and palliative measures for pain and suffering.)
I re-posted the long version of the below elsewhere and owing to (i hope temporary) ADD cannot remember which of the original cohort originally dug up this and posted it on MP. Sorry about that kind Sir.
Many people would not even understand the difference between pharmacy 'chemist' shop personnel and biochemists.
A biochemist writing on the regulation of biochemical pathways
"a high concentration of the functional end product of a pathway will provide negative feedback to lower the concentration of an earlier intermediate (precursor) in the pathway.
For vitaminD, the functional end product is 1,25-dihydroxy vitaminD. This is rarely measured, because its amount in the body and its stability is low and its assay is difficult and expensive.
The established logic of regulation for biochemical pathways says high levels of 1,25-dihydroxy vitaminD will lead to lowered levels of 25-monohydroxy vitaminD.
Common sense and honesty requires consideration of the strong hypothesis that people who have low levels of measured vitaminD (25-monohydroxy vitaminD) have high levels of 1,25-dihydroxy vitaminD because they are sick with some form of infection.
To suggest that the people are sick because they are vitaminD deficient without having data to rule out the above possibility (likelihood) is sloppy science."
Sallie 
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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marysue
Foundation Staff
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Posted: Thu Feb 4th, 2010 07:57 |
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Sallie,
In your post on this page:
http://www.marshallprotocol.com/view_topic.php?id=13595&forum_id=11&highlight=biochemical+pathways
you gave credit here:
you'll be interested in material posted by GeorgeinRolla about a link found in July by K, a MP member in Australia regarding an article that he found in The Mercury, a Tasmanian newspaper.
I hate it when ADD strikes too--but I love being part of a community where we're all reading enough to share and help each other remember.
That was a great quote and I bookmarked it for future reference.
Thanks for sharing it.
Marysue
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CFS/FM '95; restrict light/D Oct08; 125D70 25D30 Feb09; Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09) Marysue on Benicar
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