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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 47 |
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Posted: Thu Jul 24th, 2008 01:18 |
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My appologies Janet.
You corrected me once for PMing you, preferring information to be kept out in the open,
so I thought you'd prefer me to post to you here.
As allways, feel free to edit or even delete my posts so they may be the most publically presentable possible.
I'd like everyone reading what I write to learn from what I've gone through,
as well as what I'm getting myself into, like the Lenoard Loeb character portrayed by Robert DeNiro in Awakenings, which on my bad days is exactly how I feel.
-Lug
Last edited on Thu Jul 24th, 2008 01:26 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 492 |
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Posted: Thu Jul 24th, 2008 04:55 |
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Lug,
I watched Awakenings recently and saw how the drug my father (not on the MP) has taken for quite some time for some other dx was used to try to get some leverage, with some successes and of course, some eventual return to status quo. Seems my father got much the same short term palliation result. Not good.
Your situation is most certainly difficult. Maybe knowing that the phase 1 process helped me work with my doctor to understand that the predictability of the science was there, just because I was clearly impacted with obvious responses. If the science had correctly predicted both the D metabolites indicator and the initial results I experienced in phase1, how could there be any question about moving forward into phase2?
Learning and understanding what you can about the MP helps you. Keeping track of things that are really important to keep track of, and working to incorporate your notes and what you know with your doctor is key.
Your doctor is responsible for your health. Hold those feet to the same fire you feel, in a professional way of course, so you get what you are paying for -- the health solution that works.
Keep posting and keep thinking Lug. Don't give up.--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Julia
Advocate
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Posted: Thu Jul 24th, 2008 08:05 |
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Lug,
The medical team are right now in process of revising the Phase 2/3 guidelines to make them appropriate to the needs of non-member patients. Please continue to be patient!! As Janet says, your situation is very much understood.
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 47 |
| Status: |
Offline
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Posted: Mon Aug 4th, 2008 08:39 |
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Hi Guys,
My MD appointment is one week away.
May I request some instruction on how to approach my Phase II MD session?
What should I be asking of him?
What tests does he need to run?
-L
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1.25D - 54 pg/mL 25D - 15 ng/mL - May08 - Benicar Q6H - July08 - Mino 100mg Q48 - Chronic Fatigue, Thyroidosis, Motor Retardation, Disturbed Sleep, Psoriasis, Photo-sensitivity. - NoIRs/no sunlight - May08
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Julia
Advocate
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Posted: Mon Aug 4th, 2008 13:29 |
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Lug,
Please see What tests do I need to monitor my progress on the MP? You should ask doc to re-test 25-D to make sure your efforts to reduce ingested vitamin D are working. There's no need to retest the more expensive 1,25-D. See How often should I test D levels?
Your doc should now be able to access the Phase 2/3 guidelines via the Professionals' Forum - ask for a printout. You could also ask for a printout of 'Helpful Hints' from the information topics at the head of the Phase 2/3 forum.
Adding the Phase 2 antibiotic is in some ways the trickiest time in the MP. Please take it slowly! It can take quite a while to 'kick in'.
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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