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warrior
Member
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Posted: Sun Oct 10th, 2010 04:41 |
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H Alysia2,
Thank you for sharing your feelings and experience and I am sorry to hear that you too are not feeling well and have not recovered. Believe me it is very tough and pinful to do. None of the mainstream docs are in favor though it has a sound logic. Hope the the new research will develop in the near future to solve the mystory behind the sarc.
Pls take care of your health and if necessary , you may have to stop MP and try alternative medication. For me the Benicar dosage increase is a double edged sword increasng my IP along with reducing anxity andit is intolerable and I am taking Prednisone 10 mg to bring down the inflammation and try for alternate treatments.
Hope you will recoer soon and get well. The help from MP ought to bebetter than it is ...
Best.
warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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Chris
Support Team*
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 806 |
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Offline
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Posted: Mon Oct 11th, 2010 01:08 |
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I've heard from former MPers that getting off the drugs are very difficult..
Getting 'off the drugs' or stopping the healing is addressed in the MPKB.
http://mpkb.org/home/mp
After 6 years, getting off the benicar isn't a problem. If I stop with the antibiotics, about 3 weeks after the last zith dose, I stop feeling the need for the benicar.
In the middle of the MP, it wasn't so much fun. I think prednisone would have always stopped it, but I had been down that path for the preceding 12 years.
Good luck with your search for health.
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Deedee
Member*
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Posted: Mon Oct 11th, 2010 04:56 |
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"The help from MP ought to be better than it is ..."
I have been on the MP since August 2008 and I feel like I have had exceptional support from moderators, volunteers and Trevor. I have been especially blessed to have several people take me under their wing and I have tried to be as helpful as possible to others. Still, I understood from the beginning that I had responsibility to educate myself and to have proper medical support. I knew this because I read the guidelines.
I don't think you are being fair, Warrior. I know that I personally tried to help you many times, as did others, but you decided not to follow the advice in the guidelines although you were give the links and encouraged over and over again to take those guidelines to your MP doctor. When we suggested your doctor call Trevor, you told us he refused to call to speak with Trevor. Still, through all of this, we continued to try our best to help you.
It is true that it takes a certain amount of independent study and research to find your own answers (along with physician support) in order to successfully navigate the MP. This is outlined in the "checklist" required before starting the MP. Both "Educating Oneself" and "Working with an MP Physician" are listed as requirements PRIOR to starting the MP. (http://mpkb.org/home/starting/prempchecklist)
To start the MP without an MP physician or self-education is a violation of the participation agreement and it is unsafe and unwise to do so. This does not mean that the site is not supportive. It means you were not prepared. I don't understand why you have to leave blaming the people who tried to help you. Still, I wish you (and Alycia) the very best and wish you both a full recovery.
[url][/url]
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Aunt Diana
Member*
| Joined: | Fri Oct 26th, 2007 |
| Location: | |
| Posts: | 210 |
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Offline
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Posted: Tue Oct 12th, 2010 01:14 |
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It sounds to me that Alycia 2 does not understand the basic tenets of the MP such as IPs and how they are part of the healing process. Of course one feels worse when one starts the protocol. It is clearly described and should be expected. It is not an easy cure and one must expect to go through some difficult times, which is why controlling the IPs is stressed so much on the website.
I have been on this protocol for 4.5+ years. I have improved dramatically. I can do things now that I could not do for twenty odd years. There are days when I feel absolutely wonderful.
One should not adopt this protocol if one is not prepared to learn about it and understand the ramifications.
As to the support on the website....pulease.... tell me of any thing better out there. There is nothing like it and it is short of miraculous.
Most medical discoveries take at least 20 years to become accepted...the MP is no exception and hasn't even hit the 10 year mark. So am I surprised that mainstream medicine doesn't get it? Also, was mainstream medicine able to help me feel better or even recognize what was causing my illness? A resounding NO to both those questions
There are always some people who just don't understand and Alycia seems to be one of them. I am sorry for her because if she would be patient and continue to follow this protocol she will eventually regain her health.
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