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Honey
Member in Phase 3
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Posted: Sun Mar 2nd, 2008 11:45 |
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MP meds:
olmesartan 40mg q8h (88 days), mino 100mg q72h (13 days)
Non-MP palliative med use: none
Natural light exposure:
90-min car commute x5, ~2 hrs extra driving/walking
Symptoms:
fatigue (6/10), photosensitivity, neck pain/parasthesia (2/10), sore throat (4/10), flu-ey feeling (5/10).
Comments:
1. Phase 2 meds questions
2. My only sister just got engaged, and she wants me to attend her wedding in approximately six months, in the U.S. summer. I am a bit anxious about this because I won't be able to participate or be in family pictures without sunglasses and the rest of my disguise if it's outdoors (or might not be able to attend at all), but I don't want to force her to have an indoor wedding just for me. Is it possible to take a break from the MP then? And how would it affect my photosensitivity?
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CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Mar08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Offline
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Posted: Sun Mar 2nd, 2008 19:18 |
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Thank you for checking in H.
The questions you asked regarding phase II options had to be removed from the Phase I forum. Please re-post them in the phase 2/3 forum. A response to your questions will be posted as soon as you place your questions there. Thank you.
Many members have had family activities to attend and are able to do so by adjusting their meds properly and using the effective palliative measures they have established; so try not to worry too much about attending the upcoming family wedding.
What precautions do I need to take when I am going out or when travelling away?
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Honey
Member in Phase 3
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Posted: Sun Mar 2nd, 2008 20:35 |
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| thanks for your reply.
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CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Mar08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Honey
Member in Phase 3
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Posted: Sun Sep 7th, 2008 13:20 |
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MP meds:
olmesartan 40mg Q8H (274 days), almost to phase 3
Palliative meds:
DaktaGold (ketoconazole 2% cream) on toes
Natural light exposure:
90-min car commute x4.5, + heaps more driving and attendance at an out-of-town, outdoor wedding on the weekend
Symptoms:
photosensitivity, arthritis in knees (5), runny nose (2), athlete's foot.
Comments:
I have only excellent news to report this week!
* The annoying itchy spots on my finger have disappeared completely, and there has been almost no herxing this week other than arthritis in my knees. They are pretty sore, but I'm excited because I know there's good work happening there and am pleasantly surprised to discover the knees are related to the rest of it. I'm secretly hoping I'll be able to ride a bike again one day (something I haven't been able to do for 14 years because of my knees).
* The whiplash in my neck and shoulders is almost unnoticeable, and the physiotherapist said my neck is completely different to the last time he saw me a year ago, especially in terms of inflammation. He agreed with me that I now appear to be "healing like a normal person" and only wants to see me two or three more times. (Last time, with a near-identical car accident and pre-MP, he treated me for six months.)
* I met a young girl earlier this week and, after a bit of discussion about my diet, she told me she wished she could trade places with me because she was deficient in vitamin D, tired and sick all the time, and doctors had never been able to figure out what's wrong with her. When I told her about the MP and how it's possible that her D levels might appear low because 25D is busy converting to 1,25D, she asked what my symptoms had been. When I told her, her eyes nearly popped out of her head - I really scared her. Apparently both she and her sister have had incredibly similar stories to me. Needless to say, I told her the MP has changed my life, wrote down the website for her and gave her my doctor's details. I hope she gets her 1,25D tested.
* But the best news is about the outdoor wedding yesterday, which I was really worried about. The weather was sunny and gorgeous, yet I was able to last the entire day WITH ABSOLUTELY NO SYMPTOMS. I had a backup plan to go back to the hotel if I started to feel unwell, but I didn't need it because I celebrated from 11am to 11pm! I was covered up while outdoors (luckily it was chilly) and got so many compliments on my outfit, especially the hat, which I lined with Sunout fabric that I cut off the bottom of my extra-long kitchen curtain (hee hee). Every time I went to the ladies' room someone complimented me on my attire, and most had no idea I was sun-sensitive - they just thought I was sensible and glamorous. I think I will have to post a pic to the fashion show forum on the MP-lifestyles site.
The reception was held in a sort of semi-covered patio and was not entirely sun-free. Although the sunlight was diffused, it was still quite noticeable. But I was able to sit through the whole thing without my hat, gloves or glasses (I had Invisible Zinc on the exposed bits, though). I also ate mushrooms, gelati, donuts that were almost pure sugar and probably contained eggs and had three mimosas (half orange juice, half champagne) over the 12 hours and HAD ABSOLUTELY NO SYMPTOMS. (Can you tell I'm excited???)
Even more amazing - today, due to some unforeseen circumstances, I had to drive the 90 minutes back home in the sunlight and had NO SYMPTOMS. I am back home now and totally, absolutely fine. I took a nap, but only because I was up late partying the night before, and even then my nap lasted 2/3 of the normal time. My boyfriend keeps checking in and asking me how my sun-symptoms are - I think we are both a little mystified and pleasantly surprised.
YAHOOOOOOOOOOOOOOO! (OK, I'll calm down now. But surely this has to be more fun for all of you wonderful volunteers to read than a horrible herx report, right?)
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CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Mar08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 31 |
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Offline
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Posted: Mon Sep 8th, 2008 06:08 |
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I LOVED READING YOUR REPORT..HONEY!  
THANK YOU!! 
Karon
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PTSD RA CFS Chron Inflam Disease| Naproxen Tramadol| 125D73 25D20(May08)| 25D14.4(Jul08)| PH1-Apr08| Lowlux Home Work NoIRS NoSun covered up| Ph2-Aug08
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Deb Grabetz
Member in Phase 2
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Posted: Mon Sep 8th, 2008 12:29 |
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Honey,
Terrific news! I remember not so long ago reading through a report, where you were struggling with IP, what a testimony to see your progress! "Ain't no stoppin' you now"... Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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