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Honey
Member in Phase 3
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Posted: Sun Mar 2nd, 2008 14:45 |
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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?
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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VEZ R.N.
Health Professional
| Joined: | Fri May 19th, 2006 |
| Location: | USA |
| Posts: | 2471 |
| Status: |
Offline
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Posted: Sun Mar 2nd, 2008 22:18 |
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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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Honey
Member in Phase 3
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Posted: Sun Mar 2nd, 2008 23:35 |
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| thanks for your reply.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 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 16:20 |
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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?)
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 68 |
| Status: |
Offline
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Posted: Mon Sep 8th, 2008 09:08 |
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I LOVED READING YOUR REPORT..HONEY!  
THANK YOU!! 
Karon
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LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
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Deb Grabetz
Member in Phase 3
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Posted: Mon Sep 8th, 2008 15:29 |
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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,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Honey
Member in Phase 3
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Posted: Sun Nov 30th, 2008 08:46 |
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MP meds:
olmesartan 40mg (358 days)
Phase 3 meds
Palliative meds: none
Natural light exposure:
90-min car commute x 5 each week, ~5 hours extra driving/walking
Symptoms:
photosensitivity, arthritis in knees (4), runny nose (2), flu-ey feeling (2).
Comments:
One week to go until my one-year MP anniversary...
I keep forgetting to update, but rest assured that no news is good news. I have been feeling great and living it up.
The pain in the rib has vanished and now I'm just dealing with the normal (mild) herx and progressing well. Aside from the rib incident, phase 3 herx has been a cakewalk compared to the earlier stuff.
My sun sensitivity took another small dip last week, so I can stay covered up outside even longer than before with no ill effects, which is great news with summer coming up. I also got my latest D results back and they are extremely low on both counts, so I'm experimenting a bit more by having a few food treats and not stressing so much about windows, etc.
The big news is that I will be moving in with my boyfriend in the next few weeks. We were a bit worried because the new house has an outdoor toilet (it's a very cute old house), and I wanted to wait until renovations were finished and the toilet's inside. But now that I am doing so well and have the lab results to show for it, I am going to move in over the Christmas break. So very exciting news all around.
Doc has removed my leash, so to speak, and said I only need to see him every few months now. He said I have had some of the best/fastest results of any of his patients and wants to write up my progress in a paper. I expect Amy Proal to contact me any time now to be listed on her website as an MP success, ha ha!
I know there's still good work to be done and I'm still dealing with photosensitivity (which, ironically, is my only major symptom now). But overall I feel really, really good and sometimes forget what life was like before. Thanks, Dr Marshall!
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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Dr Trevor Marshall
Research Team
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Posted: Sun Nov 30th, 2008 12:11 |
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Honey
Member in Phase 3
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Posted: Sun Mar 8th, 2009 05:17 |
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Alumni Update
MP meds:
olmesartan 40mg
Phase 3 meds
Palliative meds: none
Natural light exposure:
90-min car commute x 5 each week, ~3 hours extra driving/walking, and no longer fully covered up for short trips outside (e.g. hanging the washing up or walking to the nearby shops)
Symptoms:
photosensitivity, fatigue, runny nose (4), flu-ey feeling (2), headache (2).
Comments:
No updates because I've been doing so well. Assume the best unless I say otherwise!
I was feeling amazing on the first phase 3 combo until I reached the highest dose a few weeks ago. Now I'm doing well, but nothing amazing because I'm in germ-killing mode. So it's back to no walking and naps on weekends, and some funny new headaches that are annoying but tolerable. I'm still highly functional and was able to survive through a series of 14-hour days at work, due indirectly to the bushfires in Victoria, all the while herxing at maximum strength. Nearly everyone else at work got sick after all the overtime, but not me!
Even though I don't feel fabulous today, at least I know what's possible. I've been to the beach in daytime, twice (covered up, of course), I've walked up to two hours and outlasted my boyfriend, I've turned my computer screen back up to full strength and don't need to be as fussed about open windows. I've stopped wearing the full disguise when going outside for short periods, like 5-10 minutes. And the difference in heat tolerance between this summer and the previous summer (when I had just started the MP) was fantastic.
* On Saturday we're going to the bushfire appeal concert, which is all day long and outdoors.
* I'm going to participate in a Mother's Day charity walk for breast cancer, which is about 4km, I think.
* For my boyfriend's birthday, we're going to eat at a three-hat restaurant, and I'm going to eat from the vegetarian degustation menu without asking about ingredients.
* And we're planning to go to sunny Brisbane for the long weekend at the end of April.
I wouldn't have considered doing any of these things last year!
It's all baby steps - I'm still sun-sensitive and can't eat everything I want every day, but I feel like I have so much more flexibility in my life, which is great. I've tested my limits and know how to stay safe (in terms of sun and food), yet I love watching the limits extend all the time. And I know when I'm finished with this abx combo that I'll be feeling like a superhero again.
____________________
CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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BARNEY
Moderator
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Posted: Sun Mar 8th, 2009 14:41 |
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Honey,
What wonderful news........you improvement is great!! 14hr days are rough for anyone...but you seemed to pull it off quite well.
Here's hoping you have a great time in all your plans coming up BUT be careful of that crazy sun/eats. I know you are aware what can happen as you stated you have it figured out. Have fun for all of us.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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