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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 67 |
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Posted: Thu Sep 11th, 2008 04:54 |
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| Are sauna's allowed on this program? I read something about far-infrared sauna's not being allowed for obvious reasons, but what about standard dry sauna's? They can cause increased body temperature which can lead to increased immunopathology, so would this be something we could experiment with?
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Julia
Member
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Posted: Thu Sep 11th, 2008 17:15 |
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| See Incident Radiation Tutorial.
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 67 |
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Posted: Fri Sep 12th, 2008 23:55 |
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Hi group,
I've researched the posts but can't find an answer to these questions.
-How long should Benicar take to work?
-How long does it take for the photosensitivity to set in, if it does? Does it generally only occur after you've started wearing the NoIR's?
Thanks
from Chanippo's blood results
-List all meds, supplements (both prescription and OTC) you have been taking and why. Daily - Cod liver oil (containing vit A 4000IU and Vit D 400 IU), fis oil 3x1000mg, 150mg vit b, 100mg niacin, 600mg calc/mag, 50mg zinc, silymarin, 4000mg vit c. All this was recommended for an anti-candida diet. I also use ventolin occasionally.
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 67 |
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Posted: Sat Sep 13th, 2008 00:14 |
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I was wondering, how can I get access to some of the info that is currently locked to non-members of the study site? I am particularly interested in the Australian Members section and the Benicar for Aussies. I also frequently come across parts that would be useful to read.
Thanks
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Julia
Member
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Posted: Sat Sep 13th, 2008 00:26 |
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You can't at present, Matt, but have you seen The Australian Autoimmunity Foundation website?
Where To Purchase Benicar For Self-pay Members
Your doctor has access to all the MP info, so you could ask him/her to print you out anything.
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Julia
Member
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Posted: Sat Sep 13th, 2008 11:28 |
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Sorry, Matt, I missed your previous questions.
-How long should Benicar take to work?
If you're taking the full MP dose of 40mg every 6-8hrs, it will be working immediately to lower your 1,25-D, but not everyone feels any different on Benicar alone. Some feel immediate benefit, some get a bit of dizziness as the hormones adjust.
Benicar-Basic Information
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
-How long does it take for the photosensitivity to set in, if it does? Does it generally only occur after you've started wearing the NoIR's?
Photosensitivity varies a lot with the individual.
Light Sensitivity-Basic Information
I see you've been taking a lot of supplementary vit D in fish oils etc. You'll want to get that high 25-D level down as a matter of priority. The Importance of Reducing 25-D
Please note that nearly all supplements are contraindicated, not just vit D ones. Why do I have to stop my alternative treatment and avoid most supplements?
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 67 |
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Posted: Sat Sep 13th, 2008 12:16 |
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Thanks Julia,
I've noticed a bit of dizziness since starting Benicar, and generally feel better than I did before beginning the MP. But I started feeling better after I stopped all the D foods and supplements, as well as all other supplements, and limiting sun exposure a week ago. One of the most amazing things is that since i've started the MP, in only a week, my digestion has normalised for the first time in about 6 years. I don't need digestive enzymes anymore, and my appetite has increased. This is a minor miracle for me.
Matt
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Julia
Member
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Posted: Sat Sep 13th, 2008 12:56 |
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
| Location: | Sydney, Australia |
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Posted: Tue Sep 16th, 2008 07:22 |
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Hi group,
As i've written previously, since beginning the MP my digestion has normalised for the fist time in many years. I've been on the Benicar for 5 days now, but noticed the improvements before beginning it. Now, I don't seem to be able to satiate my appetite! I have three big meals a day, then usually need a substantial snack in between each meal. This has been going on for about a week now. The problem is, I haven't put on any weight, and in fact seem to have even lost a touch more. Just before this I had been losing weight due to an inability to digest foods and diarrhea that went on for about 10 days. My weight then stabilised, but since my hunger has increased i'm not putting on weight. I'm also a little constipated, so thought I should be weighing more if anything.
I'm wondering, could I perhaps have parasites that are helping me consume my food that have been "re-awakened" by some of the new foods i've added to my diet? (i.e. nuts, small amount of milk with hot chocolate, and yoghurt).
Any ideas? I'm not complaining, I am loving the good digestion, just want to make sure everything is ok.
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Chanippo
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| Location: | Sydney, Australia |
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Posted: Tue Sep 16th, 2008 11:08 |
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I thought I would post some reaction i've been experiencing over the five das since beginning Benicar, and week 2 for dietary changes.
-Stiffness in muscles, intermittently
-Cold hands and feet, intermittently
-Sweating, intermittently
-Aching muscles/joints, some muscles/joints are constant, some intermittent
-Ease in falling asleep, although i'm unsure if this is due to MP yet because over the last 8 months my sleep has changed a lot. I still wake frequently and don't feel refreshed in the morning
-Fatigue is better than before MP
-Digestion and appetite still good
None of the IP has been intolerable so far, so I think i'm going to begin mino this Friday.
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 261 |
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Posted: Wed Sep 17th, 2008 00:13 |
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Matt, do you know there is a meeting in Sydney 7.30 tonite near Central station. See Australian Members news and events, under "Ask your Questions here".
sound as if you could be interested .. Sallie
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
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Posted: Wed Sep 17th, 2008 00:35 |
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Yes Sally, i'm going to be there. My doctor is at the medical centre there.
See you there!
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Kas
Member
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Posted: Wed Sep 17th, 2008 00:54 |
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I was a huge candida sufferer in the early stages of the MP, but without any specific diet, and keeping my sugars low, I have been able to control the symptoms without other meds. Sugar seems to be a big culprit and so I barely eat things with added sugar, but when I now do have a bit, it does not seem to cause a problem as it did before.
For breakfast, I either have two slices of yeast - free spelt/ eziekiel bread with almond butter and some weak black / herbal tea ( bag dipped in boiling water for a second or two), or I have organic plain, fat- free yoghurt with no additives, with a teaspoon of psyllium powder, some blueberries, strawberries, a sprinkling of cinnamon, a few walnuts and a few almonds. I sometimes also had a tablespoon or so of organic granola with no additives. This is very filling, as I drink a glass of water before eating it, some during it and some afterwards. My irritable bowel symptoms are greatly improved the days I have this. On the weekends, I have a poached egg white with my tea and toast and sometimes some rice 'cheddar' cheese, which melts well and is good for making grilled sandwhiches with.
I have extremely low BP always, and I have found that eating dark chocolate can further lower it, so no more of that, as can green tea, so I have cut that out, too.
It's all really a matter of trial and error, it seems, and finding the correct foods for your situation.
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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wind flower
Member
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Posted: Wed Sep 17th, 2008 02:01 |
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| Does coconut oil have the same negative affect when it is used only on the skin as a moisturizer?
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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
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Posted: Wed Sep 17th, 2008 06:25 |
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Kas,
I have extremely low BP always, and I have found that eating dark chocolate can further lower it, so no more of that, as can green tea, so I have cut that out, too.
I could have gone all year without reading that ... my BP dropped to 75/45 over the weekend, and yes, we do keep a fair pile of dark chocolate around.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 261 |
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Posted: Wed Sep 17th, 2008 06:57 |
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maybe Matt , saw my doc today, my partner seemed unconvinced until today, suddenly I've the scripts, Doc. says NO to one week hols before I start, "start now while you know you're actually feeling better" and taking precautions against the dread Vit. D
setting up my curtaining, PANIC (one of my simptoms), not sure if I'll make it to meeintg, start MP tomorrow or Friday.. feel like a friend from a former life who, poised on one of the big slides at Lune Park was saying "what do I do next" when he disappeared over the edge. anyway, we're a cohort.. start same month same town, if I don't make it I'll get some feedback anyhow. Lots a luck, hang in....Sal
catch you later re candida diet, I did with good results when no extra D was recommended, bought me some time IMHO. PS I (mostly) gave up sugar eons ago, so that has hindered the naughty little bugs 
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 67 |
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Posted: Wed Sep 17th, 2008 13:12 |
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| I wouldn't think coconut il would have the same effect when applied to the skin. It's only a concern if it helps to kill off the bacteria inside the body and the body then has to deal with the toxic load. Anything on the outer skin shouldn't affect the immune system.
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Julia
Member
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Posted: Wed Sep 17th, 2008 17:26 |
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Anything on the outer skin shouldn't affect the immune system.
I don't know anything about coconut oil applied to the skin, but some creams and oils absorbed by the skin certainly can affect more than just the skin, e.g. strong steroid creams are associated with osteonecrosis of the femoral head.
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
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Posted: Thu Sep 18th, 2008 01:52 |
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Sorry I meant any coconut oil on the outer skin, I wouldn't imagine it would cause a systemic die-off, which is the main reason we are told to avoid it.
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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Chanippo
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| Joined: | Fri Sep 5th, 2008 |
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| Posts: | 67 |
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Posted: Thu Sep 18th, 2008 01:56 |
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I've been hearing people are having a lot of difficulty getting off of the MP once they are done with phase 3. Many have been getting terrible IP reactions and have been unable to come off of it.
Is there any explanation for this? Is this something we should be concerned about? For me, continuing the way I was is not an option so even if I have to stay on the MP indefinitely, that's better than living with the illness. But I think we should know what to expect when trying to come off the MP.
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Brain dysfunction, insomnia, depression. D-tests 5Sep08 - 25D = 28.8 ng/ml, 1,25D = 43.33 pg/ml (delay of up to 3 hours before freezing). Ph1 Sep08. NoIR's, blinds drawn in house, very minimal sun exp. D re-test 5NOV08 = 21.2ngml. D re-test 28FEB08 14.4ng
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