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Chris
Moderator
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Posted: Sun Sep 7th, 2008 04:55 |
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Lee,
I don't know if it's the storied phase 5 I've hit. But I do know that my response to sun has changed. Instead of a general feeling of misery, it's quite specific. It starts with a sharp back ache, alleviated by heat & fluids, and then builds to an uncomfortable fever, up to 102, with a nasty ice-pick in the eye migraine. The interesting thing is that it scales back overnight, almost like the daily herx cycle that mino gave back in phase 1. Pre-MP, the misery after too much light was weeks long.
I suppose it could be that the 1,25-D is working as it should, turning on the immune system, killing a lot, and creating lots of cytokines, which flood the kidneys and cause backaches. But, that kind of science is above my paygrade. I'll just stay in the dark, until such time as I no longer need to. 
One interesting note about coffee, is that as I get better I just drink less and less of it. It really appears to be a self-medication thing for me. I guess Starbucks is another on the list of things to short if the MP takes off.
-- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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expate
Member in Phase 3
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Posted: Sun Sep 7th, 2008 05:36 |
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I hope you don't mind me butting in here, but this week I've been thinking about giving up coffee. The uncomfortable jitters that I used to get after drinking too much coffee are coming upon me after just 3/4 cup. But then this morning, it was OK again and I was able to drink a large mug, no effect.
 dette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Lee
Member in Phase 3
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Posted: Mon Sep 8th, 2008 21:54 |
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Hi! I think it may depend on your IP level at the time? Not sure ....I just know I am in a very tough combo right now and cannot tolerate my beloved coffee or teas. I do decaff only so it is not the caffine. I have found a tiny piece of apple with a little sea salt helps me through a strong IP .... Lee
____________________
2003 SARC w/COPD Hyper-Flex Fibro. Hashimotos
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.sunlight w/noirs
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Chris
Moderator
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Posted: Mon Sep 8th, 2008 23:07 |
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Coffee drinking does seem to be dependent on the bugs, and the current abx/herx. At one point, I was able to completely stop coffee without any withdrawal pangs. The need for it just stopped. Then, a change in abx, and a longer herx cycle meant I needed it in the morning to get moving. Now, after a couple of months, I'm finding a half-empty cup at the end of the day - it just stops tasting good after a half-cup and I don't finish it.
My wife has different problems, she has always gotten jittery (or at least for the last 25 years) from the full strength stuff. I don't think that has changed, and it might not. I'm finding that I can no longer tolerate the extreme levels of caffeine that used to be needed to get through the day.
I'm pretty convinced that a lot of 'bad habits' we get nagged about are really self-medication attempts.
-- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Lee
Member in Phase 3
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Posted: Mon Sep 8th, 2008 23:27 |
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| I agree Chris! But I also will take an apple slice over a lortab anyday .... Lee
____________________
2003 SARC w/COPD Hyper-Flex Fibro. Hashimotos
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.sunlight w/noirs
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expate
Member in Phase 3
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Posted: Mon Sep 8th, 2008 23:30 |
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Chris wrote:
I'm pretty convinced that a lot of 'bad habits' we get nagged about are really self-medication attempts.
-- Chris
*nods in agreement*
 dette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Chris
Moderator
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Posted: Sun Nov 23rd, 2008 05:34 |
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I'm taking an MP holiday during the holidays. It's been 10 days since the last antibiotics and 2 since the last benicar.
Other than reduced peaks, I'm not noticing much difference. But then, the antibiotics had stopped showing much of a two day cycle in herx either.
There are still symptoms I'd like cleared, and osteoporosis is still a provable diagnosis, so do expect to restart in the new yeear.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Mon Nov 24th, 2008 09:09 |
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Hmph. I misjudged things, and the immune system is working too well, and I still need the benicar.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Sun Jan 25th, 2009 17:40 |
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We got through the holidays OK, though the grandkids gave me a nasty head cold that lasted 3 weeks. We both found out that we are now highly sensitive to sugar, a piece of birthday cake makes us miserable.
Wish me well, folks. I have to spend the next week in Tustin CA, taking training, much of which will be outdoors.
While my light sensitivity is slowing reducing, I haven't found that magic abx combo that directly affects the light sensitivity. So, I've stocked up on benicar, k-cream, zinc oxide creams, wide brimmed hats, hats with drapes, black polypropylene gloves, leather gloves, etc. With luck, it'll rain all week. (Sorry about that thought for you in CA, unless you want the rain).
-- Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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expate
Member in Phase 3
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Posted: Sun Jan 25th, 2009 18:26 |
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Chris,
I hope the weather cooperates. I don't envy you. I've totally been enjoying the winter weather. I can cover up and not be miserable. I've been thinking ahead to warmer weather as the result of one day in the 70's here. Uggg!
We need to have MP clinics/resorts/spas in northern and southern hemispheres so that we can get relief in off seasons. When the weather is 100 plus here I could take off for the southern bit of Chile or New Zealand. Oh yeah, um airfare anyone?
dette
Last edited on Sun Jan 25th, 2009 22:50 by expate
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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BARNEY
Moderator
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Posted: Sun Jan 25th, 2009 22:45 |
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Chris,
Let's hope for rain...but....sounds like you got the rest of it under control. I will add my 2 cents worth for what I now do when I have to be outside for the biggest part of the day........Before I go outside....instead of taking my 20mg Benicar (@3hrs), I take 40mg Benicar.....then if I feel bad when I get home...my next 20mg Benicar becomes 40mg instead.
GOOD LUCK!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Chris
Moderator
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Posted: Tue Jan 27th, 2009 00:32 |
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It was a very bright, cool day out. So I could wear my rain coat & hood most of the time we were outside. Except actually doing the climbing.
I guess old dogs can learn some tricks. I got up & down the 25' poles without harm, and the aches from the sun flare went away pretty quickly, but brain fog is replacing them.
Last edited on Tue Jan 27th, 2009 00:53 by Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Wed Feb 4th, 2009 17:41 |
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I switched 3 weeks back to ZB, to get away from the neuro herx of clindy - mino - deme.
Boy, what a change. I'm not setting the world on fire, but I can see happy from here.
You know, I thought I was complaining a lot, and unnecessarily, when I gave out herx numbers of 7 or 8 or more. I wasn't. I'd just lost sight of how good healthy people feel.
The other side of the problem is that healthy folks have absolutely no idea of how bad TH1 folks feel. My wife is just now seeing those days of absolutely no energy that used to be my usual state. She was patient with me, but there's no substitute for personal experience to engender empathy.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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Chris
Moderator
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Posted: Tue Jul 21st, 2009 18:12 |
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5 years and counting. Still having herx, still react to the sun.
I'm pretty much in phase 5, doing a bit of abx, but primarily to moderate the herx, not provoke it.
Spent a couple of days in Sunny Atlanta, in a classroom with 1 glass wall. After two days of that, including a bit of outdoor time at lunch, I got a mild fever (99F) for a day or so, along with a bit of IBS. Not bad considering my history.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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BARNEY
Moderator
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Posted: Wed Jul 22nd, 2009 02:16 |
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Chris,
I am glad to see that someone else who has been on MP as long as you and I, still has to fight the sun. Not that I think that is good, it is not, but that we share the same problem.
Here's to our getting past that problem.
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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