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Scarab
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Posted: Sun Sep 17th, 2006 14:06 |
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previous: Alex on Benicar
benicar 40mg q6h- Spt 5th. 25mg mino q48h - 17th Sept.
Greetings from the void
I sent off my first post on this thread a few minutes ago but something happened and it disappeared.
I took my 1st mino dose a few hours ago so far nothing to report except that I have a very active imagination. I am so terrified that i'm seeing herx symptsoms in everything. So far so good.
I'm glad I made it here. Thankyou all for the support and info.
Alex
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Scarab
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Posted: Wed Sep 20th, 2006 04:44 |
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benicar 40mg q6h- Spt 5th. 25mg mino q48h - 17th Sept.
Well who would have thought that taking half a little pill could have such effect. 2 hrs after the first dose I began itching all aver my body. Annoying but not difficult. By the time I was going to bed I noticed strange visual disturbances . My vision seemed to tunnel and I saw lights. It was quite entertaining, once I relaxed, but I admit initially I panicked. These symptoms are weird. .
After 24 hrs I was experiencing burning itchy eyes (like they had sand in them), hot and cold sensations and by bed time colicky pain just under my bottom left ribs and lung.
Since starting mino I have not fallen asleep before 6am and I find that very difficult. So far the rest is fairly easy to deal with.
I must say both my doc and myself are really fascinated by this process. It really is amazing. I took a 2nd dose last night expecting an immediate symptom response like the first time but within hours everything had stopped and I felt really well. WEIRD
My doc rang me today and she thinks I may need meds to sleep. Not too happy about that but I could be insane next time she comes to see me. I’ve read that most people seem to use valium so will discuss with Doc. Can she go on the MP site for phycicians and get some help with what to prescribe?
cheers - Alex
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Aussie Barb
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Posted: Wed Sep 20th, 2006 04:55 |
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Alex
You are very fortunate to have a supportive interested Dr..
You may invite your Dr to join the
PRIVATE SECTION FOR HEALTH PROFESSIONALS
see I have insomnia and fatigue. What should I do?
and also The aim or the key is to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines.
Phase One is the training ground for getting the feel of the herx /symptoms and gaining personal experience in managing all aspects of MP. ie eg including your meds, and light exposure and D avoidance. Tools to check: << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
You can try extending the mino dose to see if that is helpful. Some find the 3 day dosing gives more herx.. dont let it go to intolerable, take your dose at a shorter time if necessary to hold your herx at tolerable.
and some find that the 3 day dosing gives them a free day to have a breather.
Adjusting your meds will help you to gain experience in managing your meds to achieve tolerable Herxing...
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Scarab
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Posted: Sat Sep 23rd, 2006 18:16 |
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benicar 40mg q6h- Spt 5th. 25mg mino q48h - 17th Sept
Hi there
Took 25 mino about 3pm on 22nd and felt fine for 36 hrs.
Then ar midnight -Muscle spasms upper arm muscles, became vague and forgetful- very sensitive to sound. An hour later the muscles in my jaw became so fatigued I could hardly talk (every-one was happy). I then got "the flu"- runny nose, stuffy head, fever- in 5 mins. I went to sleep at 8.30am. Slept all day waking only to take benicar and 4th dose 25mg mino. Woke feeling great and have felt great since.
Everything is tolerable and still fascinating. I still am not sleeping well but I can handle it all and work.
alex
My mum (76 yo dx lupus 25yr ago) is showing a great deal of interest in MP now that I have started. She lives in New Zealand and before she goes any further wants to have her D levels tested. My sister has already sounded her own doc out and he is non compliant. do you have any idea the best labs to have the tests done at.
thank you as always you wonderful people
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Aussie Barb
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Posted: Sat Sep 23rd, 2006 20:51 |
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Alex
Thank you for posting..
re NZ Drs etc.
I will send you a list and also, you may wish to make contact with others in that area (see this link) by private message.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Scarab
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Posted: Mon Sep 25th, 2006 04:02 |
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Thanks for the info Barb...
Not sure if I need to post as nothing at all is happening except that I feel really good. Seemingly no reaction at all to the 4th 25mg of mino. I even got up this morning and cleaned the entire house and did all the laundry. Is this OK?
have just taken the 5th 25 mg of mino. Should I wait 72hrs between doses to strenghten the herx? just a tad confused.
Oh well we will see...Alex
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Aussie Barb
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Posted: Mon Sep 25th, 2006 04:20 |
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Thank you Alex
It is good to post regularly.. for your own now and future reference, and for Staff and others reading..
Extending the schedule to 72H is a good idea for you at this point..
Some find the 3 day dosing gives more herx.. dont let it go to intolerable, take your dose at a shorter time if necessary to hold your herx at tolerable.
and some find that the 3 day dosing gives them a free day to have a breather.
see the self assesser herx checker FAQ Why isn't the Marshall Protocol working? what am I doing wrong? Check thru this one aspect at a time for yourself..
Some have the Phase One doc printed to check the details..
Thanks, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Scarab
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Posted: Mon Sep 25th, 2006 13:16 |
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OOps forgot my 6pm benicar dose. Took it immediately I remembereed (just over 3 hrs late) My memory was jogged when I suddenly began to feel very odd. I have read the instructions on "what to do if I forget a dose" and will get it all back to normal (hope fully) by tomorrow.
Just thought I'd let you know - Cheers Alex
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Aussie Barb
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Posted: Mon Sep 25th, 2006 16:54 |
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Thanks Alex
as per the FAQ, you may find that a dosette and an alarm are helpful..
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Scarab
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Posted: Tue Sep 26th, 2006 01:04 |
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benicar 40mg q6h- Spt 5th. 25mg mino q48h - 17th Sept
I am hoping someone can help
the 10% NOirs fit overs I purchased just last month have broken. The small hinge like structure on the arm that fits into the holes on the eye piece has broken.
In the short term can anyone advice on the best way to mend them (I never go out so they are always on my face)
and can people reccommend an alternative. I am obviously hesitant about using this product again.
I ex[ected them to last more than a month. Anyone else found them so shoddy?
thankyou-Alex
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Aussie Barb
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Posted: Tue Sep 26th, 2006 01:13 |
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Alex
There are a number of repair tips and options in PROTECTING YOUR EYES
and... the glasses are usually replaced if you get back to the retailer.. you can ask for/discuss options.
and... if you can do so, it is best to have spares.. in the meantime, any dark glasses you have will do for inside..
Others may have more input.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Scarab
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Posted: Wed Sep 27th, 2006 04:13 |
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benicar 40mg q6h- Spt 5th. 25mg mino q48h - 17th Sept
21 hours after my last (5th) abx dose I started feeling discomfort. Painful R eye and sinuses, stuffy head, generally feeling ill, A few hours later dizziness, headache and my ears become stuffy. I had t go to bed for a few hours (still could not sleep), When I got up I experienced pain in my abdomen, muscle weakness in my jaw and arms and I felt very unbalanced. Most symptoms had resolved by 36 hrs after abx.
I was going to extend this abx cycle to 72 hours but as I was very late with one of the benicar doses I will wait to extend dosing times till the next cycle.
The worst of it all is insomnia. I seem unable to sleep more than 1.5 – 2 hours at a time. I hope this most difficult situation resolves itself. I am just about to take the 6th abx dose.
Thanks Barb for the info -I managed to fix my glasses by removing one of the arms from the 2% fit overs. that I don’t tend to use. I never go out during the day at the moment and I have a pair of wrap arounds 2% for when I do in the future. I feel happy again as I could not live without my inside glasses
Cheers Alex
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Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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jrfoutin
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Posted: Wed Sep 27th, 2006 04:29 |
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Mcaleesa,
I was very, very light sensitive when starting the MP. It does lessen with time. My sleep disturbance wasn't exactly the same, but I am now sleeping much better than I have in years. Keep doing the MP, these resolve over time.
Also, whenever I post I always expect it to fall into oblivion, so before I hit "send" I quickly copy the whole post to the clipboard. If the send works as it should, then I don't worry about it. If the send fails, then I just open a new "Post Reply" window and paste (Ctrl+V) my post in quickly. Nothing lost.
Some write their posts in a notepad and then copy/paste it into a "Post Reply" window. Either way, it saves lots of time in the long run.
Glad you are here!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Scarab
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Posted: Fri Sep 29th, 2006 07:45 |
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Sept 5th-benicar 40mg q6h 17th Sept-25mg mino q48h, now q72h
Hey Janet
Thanks so much for the advice and support. I am now drafting posts onto word. Very sensible.
I did actually get some sleep last night. Two lots of 4 hours straight. That's a bit of a record since I started MP. My doc came today and gave me a script for valium. I can't believe i have a script for valium but it was getting a bit desparate. She also suggested a drug called stilnox which is zolpictem tartrate. She's hoping this will keep me asleep once I get there. She is Keen for me to check on this site that it's compatible with MP.
So thanks for your kindness and interest. I am looking forward to sleeping with ease again
alex
____________________
Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Posted: Fri Sep 29th, 2006 15:05 |
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Alex,
Do you mean zolpidem tartrate(Ambien)]?
Unless, your insomnia is intolerable, you will be better off managing it by adjusting the MP meds to dampen the Herx as needed. We have no idea how this medication might affect your immune system or if it will hinder your progress.
Best, Meg
P.S. Please see Mikes' lastest post.Last edited on Fri Sep 29th, 2006 16:08 by Foundation Staff
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Scarab
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Posted: Sat Sep 30th, 2006 10:41 |
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Sept 5th-benicar 40mg q6h 17th Sept-25mg mino q48h, now q72h
Yes meg
That’s the one and the same drug and I will not be taking any of that… thank you. I just read the post you directed me to and I think I will forget about using any medication for the insomnia. I got over 8 hours of sleep yesterday and today so I’m felling much more positive about the whole sleep thing. But then I have had no herxing to speak of for approx 72 hrs.
I took the 6th 25 mg of Mino on the 27th for a 72 hr cycle. I was virtually herx free with the exception 2 very short periods of spaciness, lack of concentration, and slight muscle weakness both occurring after taking baths.
I took another 25mg after the 72hr today and am wondering whether I should wait 72 hrs to take the next or revert back to 48 hr dosing or is it time to go to 50mg if nothing is happening.
I never go out at all during the day, my house is a black out zone, I don’t touch D foods (with the exception of very lean meat) and I take nothing except benicar and minocyclin. I have just got some valium from my doc but have not taken any.
Thanks in advance
Alex
____________________
Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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Aussie Barb
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Posted: Sat Sep 30th, 2006 10:54 |
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Thanks Alex
If the Herx has decreased to a level where you can tolerate more Herxing, you can increase the mino to 50mg..
some use the 3 day dosing to give them a free day from Herx to have a breather.
Some use the 3 day dosing to get more herx.. but dont let it go to intolerable, take your dose at a shorter time if necessary to hold your herx at tolerable.
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Scarab
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Posted: Fri Oct 6th, 2006 18:53 |
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Benicar 40mgs q6h, Minocycline 50mgs q48hrs
Hello all
I have not posted for a while as there has been nothing much to report. For a few days before I went up to 50mgs of abx I had been feeling really well with what I identified as very mild herx reaction. I managed to catch up on missed sleep big time.
I began taking 50mg (q48h) of minocycline on the 2nd October at midnight before going to bed. Apart from a bit of joint pain, sinus stuffiness with slight bleeding, numbness in the tips of my fingers and a bit of muscle tension everything has been great.
I have just taken the 3rd dose of 50mg and I am beginning to have concerns about the mildness of the herx reactions. I have read the section “Why the Marshall Protocol isn’t working for me? What am I dong wrong?” I have checked off everything and believe I am following this program to the letter.
On the positive side I feel really great. The best I have felt in ages. My bowels are behaving well my fogginess has diminished and that awful fatigue is more or less departed. Even a very large ugly wart on my little finger (that has been unsuccessfully frozen off 3 times in the past 2 years) has shrunk and all but gone.
Am I just not recognizing subtle symptoms? I started this protocol with trepidation expecting to feel really really bad. Although it wasn’t the best time for me the first few weeks I must say I feel a lot better than before I started.
I don't want to be a fuss pot but it is important to me to do this properly so I would appreciate any advice in case I am overlooking something so I can correct it..
Thanks.
In gratitude - Alex
____________________
Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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jrfoutin
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Posted: Fri Oct 6th, 2006 19:16 |
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Alex,
You had some concern about the "mildness of the herx reactions." I have had some Herxing periods that have been less pronounced than others over the span of my time on the MP, even though I started with a 25-D of 12ng/ml.
One of my favorite Aussie Barb quotes is "tolerable Herxing is all that is required." There are a lot of MPers who would love to get to a mild Herx reaction early on, so enjoy it while it lasts (smile). You've noted improvements, so that is an indicator you are heading in the right direction. Do keep following the MP to the letter.
Your 25-D shows 20ng/ml, which is borderline to the ideal Herxing range. Some find they begin to Herx with real intent at about 12 ng/ml, so it is a good idea to continue restricting D so you can get to that range. Your 25-D is close enough that Herxing could become more pronounced any time, so cautious ramping is still a good idea.
Suggested links:
Best wishes!--Janet
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Scarab
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Posted: Fri Oct 6th, 2006 19:24 |
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Hey thanks Janet
That makes me feel better. My Doc just gave me the pathology request to be retested for D levels. I am hoping to do that this week. It will be my first trip out in daylight for 6 weeks.
Thanks again -Alex
____________________
Sarc Aug06|CFS June90| Avoid light&D NoIRs Beni40mg q6h Sept06 mino Sept06| Aug06 1,25D-57.5 25D-20 Apr07 25D-5 Apr08 25D-4| Aug 07 2% NoIRs outside only, Average 30mins per day outside K&16% zinc.
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