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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 56 |
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Posted: Thu Jul 24th, 2008 02:18 |
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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 02:26 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu Jul 24th, 2008 05:55 |
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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 (on leave)
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Posted: Thu Jul 24th, 2008 09:05 |
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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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Always consult a physician
Essential Info; FAQ; Julia's story
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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 56 |
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Posted: Mon Aug 4th, 2008 09:39 |
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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 -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Julia
Advocate (on leave)
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Posted: Mon Aug 4th, 2008 14:29 |
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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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Always consult a physician
Essential Info; FAQ; Julia's story
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Lugubrious D
Member
| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
| Posts: | 56 |
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Posted: Fri Nov 7th, 2008 03:41 |
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Hey Guys,
An article was circulated today about the supernutrient value of sunlight derived Vitamin D. ( Not the supplement kind. )
I'd love an MP RN's opinon or two on it:
http://tinyurl.com/vitamin-D-super-nutrient
I've been dutifully avoiding all sources of Vitamn D as well as living nearly mole like in a tunnel for over six months now.
I'm also on a fairly respectable dosage of ABXs.
My skin's legions have not improved at all. Sunlight have researched is known to sometimes improve skin problems.
Is it at all possible that sulight generated Vitamin D can actually be healthful
and avoiding it to the Nth degree might be counter productive?
I can grasp the logic of avoiding artificial sources of Vitamin D.
Supplements are man made molecules engineered in labs, grown by bacterium.
What I have a hard time grasping is why the grand desginer would somehow secretly increase a creature's healfulness
by forcing them to live in a cave, avoiding planetary sunlight as much as possible. - as apposed to getting some sunlight throughout the day just like nearly all creatures and plants across the planet enjoy daily.
Would not this behavior be mirrored in nature
- say when animals got ill they'd instinctively hide in the shade and caves untill their wounds and ailments healed?
Perhaps this i behavior observed in nature. I'm no expert.
I do know that after 6 months of crypt dwelling, I'm still not really feeling as healthful as I would like,
and on one day I was circumstatially forced to get some sun, some symptomology improved.
Is it possible to get some feedback on this?
Do people begin migrating back into solar exposure after some time?
How long a time period is the sunlight avoidance mandated to occur?
Thanx in advance,
-Lug
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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edj2001
Advocate
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 150 |
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Posted: Fri Nov 7th, 2008 05:41 |
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Hello Lug,
Here are a couple of reference links with more detail about VDR homeostasis that can be found at Amy’s web site and Dr. Marshall’s BioEssay paper. You may want to read these again.
Remember, the VDR is unable to regulate 1,25-D when intracellular bacterial infection and/or biofilms produce a protein (such as capnine) that acts as an antagonist to the VDR ligand. This prevents VDR homeostasis and results in high levels of 1,25-D that then interfere with other receptors. Benicar acts as an agonist to the VDR and in high enough concentration can displace the bacterial protein antagonists allowing the VDR to function again. Keeping 125-D low by avoiding sun helps this process.
Hope this helps.
Gene
http://bacteriality.com/about-the-mp/
"...Furthermore, in healthy individuals, the VDR transcribes an enzyme called CYP24. CYP24 breaks down excess 1,25-D, ensuring that the level of 1,25-D in the body stays in the normal range. But in chronically ill individuals, the VDR (which is blocked by bacterial substances) can no longer transcribe CYP24. The level of 1,25-D in the body becomes significantly elevated since there is no CYP24 to keep it in check.
Another enzyme called CYP27B1 normally regulates the amount of 25-D converted into 1,25-D. When more CYP27B1 is produced, conversion occurs at a greater rate. The cytokines released by the immune system in response to the Th1 pathogens activate a protein called Protein Kinase A (PKA). PKA in turn activates CYP27B1, causing more 25-D to be converted to 1,25-D.
These processes cause 1,25-D to rise to an unnaturally high level. Unfortunately, when 1,25-D reaches a certain threshold, it binds not just the VDR, but many of the body’s other nuclear receptors, displacing the metabolites that are meant to be in the receptors under normal conditions.
The nuclear receptors affected by 1,25-D are receptors that regulate the body’s hormones - the glucocorticoid receptor, and the alpha and beta thyroid receptors, the adrenal receptors, and the progesterone receptors, among others..."
And Dr Marshall’s paper:
http://trevormarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
“…For half a century, medical science has been noting the association between Vitamin D serum levels and disease. What developed has been a concept of ‘Vitamin D Deficiency’ based solely on the assumption that ‘low’ Vitamin D serum levels somehow cause disease processes. But this ignores the alternate hypothesis -- that the disease processes themselves regulate the Vitamin D metabolism -- that the observed ‘low’ values of Vitamin D in disease are a result of the disease process, and not the cause…”
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Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
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Molly Hall
Member
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Posted: Fri Nov 7th, 2008 23:06 |
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Can you please explain the significance of chlorogenic acid for MP participants? Thanks so much! Molly
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MHallUSA
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Rico
Advocate
| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 110 |
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Posted: Fri Nov 7th, 2008 23:25 |
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This may help...
Chlorogenic Acid in Coffee is powerful Immune modulator
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