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expate
Member
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Posted: Thu May 29th, 2008 06:38 |
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Thank you for this, Knocken. I am working on it. I, just in reducing my D intake, have noticed significant (to me) IP. Long story short, deny "D" --> wow, yes I believe in the MP (I experienced significant - ultimately positive - response), then admitted a little "D" because the response was too strong -- good... symptoms fit into my life.
Then I became lackadaisical about "D" and so experienced new IP.
As a dancer, I am tuned in to my body (and yet equally in denial about it/pain-discomfort as a part of the process) and so I experience what I think are real and significant reactions to this hormone "D".
I don't want to hijak this thread. But I do want to say that I am listening, reading, and learning.
I will not crash and burn (though I might crash, but I'll have my seatbelt on). I am listening to my body.
I will have a MUCH better understanding of how this all works once I start the meds and am able to respond accordingly from there.
And Maureen, we'll have to talk more about ballroom dancing. It's big where I am. If only I could get my husband on board.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu May 29th, 2008 16:43 |
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Wow Knochen, excellent description from one who knows.
Let's please take seriously the information sets given on the study site, and plan early to err on the side of caution with regard to light and excercise, and following the Protocol as stated.
Let's also err on the side of caution for those on this thread right now, and others looking into the MP who might read this series of posts. Please shelf any further discussion of excusing deviations from the MP information sets or actively promoting modifying light and exercise requirements. Required reading:
Light sensitivity-basic information (click here) Dr Marshall wrote:
It is not just UV light that produces Vitamin D in the skin - it is all light. Yes, I know that many of the papers you will read state otherwise, but they are incorrect. This pragma has been repeated time and time again until everybody believes it, yet few labs have actually bothered to question it. Bad science indeed.
It becomes rapidly obvious to anybody who recovers from these diseases that ALL light, even infrared, has enough energy to affect patients with Th1 disease. Take a look at our FAQ for "keratinocytes" and you will find some papers which will open your eyes on this.
Now is the time to guzzle, chugg, wallow in, and generally dive head first with whole heart into the information on the study site that will spare later grief. Read and ask questions about the MP please.
Preparation is key. You have a mountain to climb.
Best to all--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Maureensew
Member
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Posted: Fri May 30th, 2008 06:34 |
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Thank you Knochen and Janet! I have read some more about avoiding light. My plan is to set up my house at the 30 LUX level and stay indoors for the first 2 weeks.
I will get groceries in and a supply of good books before I start the meds. I will prepare the rest of my family for this.
I was going to go to one evening meeting during this time but I am having second thoughts after some of the reading I have done tonight.
Blessings Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Thu Jun 5th, 2008 16:21 |
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This is an update for me. I am pleased with my decision to stay at 3 days a week of no vit D. It has made my IP tolerable so I can work until June 27. It has given me a small taste of what it is like to adjust for IP.
I am acutally starting to feel a bit better. I think I can handle a bit more so next week I am going to go to 4 days of no vit D and see how I do.
I have decided to stop dancing at the end of June. I am still not avoiding sunlight. We are having a very cold, cloudy spring but when we do get sun I am taking advantage of being in it until June 27.
Then I will go to 30 lux in my house and stay in for the first 2 weeks and then limited outings for the rest of July and August. I have been planning some different kinds of activities that I can do while I am home. I have a variety depending on IP.
I am going to get a house cleaning service to come into my house before I start the MP and do a good cleaning. Then I won't fuss about that. I learned many years ago when I was first diagnosed with FM that an immaculate house was not a necessary life requirement. However I do use my summers off to catch up on the cleaning. This summer I won't be able to do that.
Thank you to everyone who has helped me so far. This is an amazing support system.
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Julia
Advocate (on leave)
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Posted: Thu Jun 5th, 2008 23:49 |
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Maureen,
Your experiences now are going to stand you in good stead when you start the MP I recommend FlyLady.net for free help with trying to organise a little bit of essential housework when you're feeling least like it.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Maureensew
Member
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Posted: Sun Jun 8th, 2008 03:10 |
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Thank you Julia for your encouragement. Your comments about feeling so good at retirement are wonderful. I hope to retire at 60(3 years to go) and by then I should be feeling pretty good too.
I saw my doctor today. I am sooooooooooo thankful for her.
I have already filled prescriptions from her for 40mg olmesartan and 25 mg mino. I filled the mino locally and got 50 mg capsules. They are not as easy to divide as I thought.
So, I asked her for a prescription for 25 mg mino which I will get from the Quebec pharmacy and use when I start. I told her I will use the 50 mg caps when I get to that dose.
I also asked for a presription for 20 mg olmesartan for IP. I went prepared with print outs to show her what it says on the website about this. She didn't hesitate a bit and gave me what I asked for.
I thanked her as sincerely as I could and told her how hard it is for some people to get a doctor to support them on the MP. She responded with information about how bacteria has been discovered to cause ulcers and that bacteria has been suspected in connection with rheumotology diseases and she thinks it sounds good. The exact information that is on the website to show doctors.
She also acknowledged that traditional medicing has nothing to offer me. She is very excited about this treatment and looking forward to see how I do with it.
I am feeling better. I think I am experiencing the end of IP after eliminating some Vit D. I am taking advantage of this energy to get things ready. I ordered 2 hats from Sun Precautions. I went to a thrift store and bought jeans and denim shirts.
I am starting to organize my pantry for my ingredients to make low carb bread in my breadmaker. I want to make it as simple and convenient as possible. I have tried 2 recipes so far and they are very good.
I am feeling better able to study more of the site. I also can think more clearly to think through other things I can do to be prepared for starting MP.
Good Health to everyone!
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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beeletcher
Member
| Joined: | Tue Apr 29th, 2008 |
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| Posts: | 26 |
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Posted: Sun Jun 8th, 2008 04:31 |
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Hi Maureen,
I live in Dawson Creek, BC. It is so great to find someone in the province. I have a doctor and I am starting the MP (I was accepted on May 28) on Sept 1st. I have just retired (I am 56) and have casual work in July and Aug and then nothing until Dec. So I want to have no obligations when I start.
I am like you and started to eliminate Vit D. My eyes (I have Sarcoidosis in my eyes) have been really bothering my since January, so I find so much relief with my apartment darkened. I have 2 kinds of Noirs (10% and 2 %) and wear them outside always, with a brimmed hat from Sun Precautions. I also ordered a jacket and a pair of pants, very nice and they really do keep you cool. I do notice that people ignore you on the street because you look disabled in some way. I ignore this, as I have a 23 year old handicapped son, so we are used to people ignoring us. This sounds kind of mean but that is how it is.
My family is having a hard time with this. They don't live near me, so I am trying to understand the science and then I am going to give all my family and friends copies of this. My daughter is full of bacteria as far as I am concerned. I told her she should get on it, but she doesn't want to hide from the sun. So maybe when she sees what will happen to me, she will change her mind. She had asthma, psoriasis, fibromyalgia, migraines, OCD, anxiety, bowel problems, joint pain etc. I would love to help her. She lives in Burnaby.
I will ask my Dr. for the Benicar and Minocycline in August. Did you order your Benicar(olmesartan) from Quebec? I did phone them so I could get the price. Are you getting it from anywhere else?
I did notice Herxing when I stopped my Vit D also. Eyes, joint pain and heart palpitations and fatigue. I have had to stop all caffeine again as it really bothers my heart. My brain fog is also bothering me. I have to re-type just about every word, as I mix up letters all the time. Also when I speak to people, I can't get out what I need to say. You are amazing if you are a teacher and have this.
I am a retired lab tech, so the science makes sense to me.
My Mom is going to visit in Sept so I will have someone to watch over me. She is scared to death!
I have all these things I want to do also when I get started, depending on how I feel. Like sewing! just like you said. I haven't sewed for 5 years. I am a morning person only, so by the time I finished work I was pooped and didn't do anything for myself. I am also reading alot now, and watching DVD's. I have an exercise bike, so that is what I am going to use. I wil walk outside also when the sun sets. I have no idea the energy level I will have.
I am nervous about heart herx as I don't know where the Sarcoidosis is in my body. Also the neurological symptoms scare me also. One day at a time. And I keep telling myself that I am killing bacteria which is a good thing.
Have you got the DVD's yet? They are amazing and I will show them to my family this summer. That might allay their fears.
Anyway, good luck! I would like to hear from you when you get started.
Brenda
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expate
Member
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Posted: Sun Jun 8th, 2008 04:32 |
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Great to hear how well things are going for you.
Also, you put out some good info for the rest of us (esp. the part about the mino caps not being easy to divide).
Best of luck,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Maureensew
Member
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Posted: Tue Jun 10th, 2008 19:57 |
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I am feeling a bit worse. Fatigue is greater and patience is shorter. I am feeling more emotional and spouting off a bit which is not typical for me. I think I am beginning to notice light IP. I have a mild headache that I think is from bright lights at work.
I have spent a lot of time on the site in the last few days. I am feeling more comfortable navigating the site. I am feeling more clear about the pathology and I am getting better at explaining it to people.
I continue to find very helpful info on the site. Last night I found good info on UV umbrellas. I had said I would get one a few weeks ago but I haven't yet. The recommendations make it easier for me to go ahead and order one.
I have ordered 2 UV hats, 1 set DVDs and bought a Lux meter on ebay. I plan to look for black out fabric to use on my windows. I am going to drape them over my existing curtain rods so I can take them off easily after dark if I feel the need to see the outside world and let in some air. Then I can easily put them back up before I go to bed.
I am still able to get to work which is my goal until June 25. Then I will do final preparations to start MP July 1.
I haven't received an application for the study site yet. I sent a request May 24. I am wondering if I have not received an application because I am not ready to start the MP yet.
Has anyone who is waiting to join the study site received an application?
I sent another request a few days ago. I will start the MP regardless. I just don't want to leave a stone unturned.
Blessings to all! Maureen
Last edited on Tue Jun 10th, 2008 19:59 by Maureensew
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Thu Jun 12th, 2008 06:31 |
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I found my application and sent it tonight. I have a lot to learn about computers. I feel relieved.
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Sat Jun 14th, 2008 05:47 |
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I experienced IP at work today due to exposure to sunlight. I was working at a counter next to some windows. The sun came out and I started to feel sick(mild headache and nauseau). I put on my NOIRs and I felt better. I realize that I have had this IP for a long time.
I have never attributed these symptoms to FM. I have just accepted these symptoms as part of my life. If I can be relieved of these symptoms as well as all the other symptoms that I do attribute to FM it will be a miracle.
I had my first experience dealing with people wearing my NOIRs. I felt odd but interestingly enough not one person even commented. I remember reading a post about getting used to looking different.
I am used to removing sunglasses when I talk to people so I can make eye contact. I had a few stops to make after work so I left my NOIRs on to get used to the idea.
Feeling better when I wear the NOIRs sure is motivating.
My UV hat arrived today from Sun Precautions. I will find that a challenge to get used to wearing. It looks very Hollywood. I felt self conscious. I will have to work at accepting that people may look at me as strange. I am prepared to do this no matter how I feel.
The good news is that I will have minimal reasons to go outside for the first 2 months. I can adjust to this new look gradually.
I am 2 weeks away from starting on olmesartan. My preparations are going well. I am buying black out fabric tomorrow for the windows in my house.
Blessings to all!
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Julia
Advocate (on leave)
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Posted: Sat Jun 14th, 2008 10:27 |
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Maureen,
Great to hear of all your preparations, and your determination!
Don't confuse a flare-up of symptoms caused by light with immunopathology. See Why does exposure to natural light increase symptoms? Immunopathology = symptoms caused by death of bacteria. Immunopathology Tutorial
Keep up the good work! 
Julia
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Maureensew
Member
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Posted: Sat Jun 14th, 2008 16:53 |
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Hi Julia, Thank you for the links . I was very pleaed with how I was able to follow the information.
The pathology is becoming more clear all the time. It is no longer like attempting to read another language. Whoooooooooof!
Blessings to all!
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Thu Jun 19th, 2008 16:24 |
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My light meter arrived 2 days ago. I have been checking out light levels in my house and at work. It is great to have a precise measurement. I have been pleasantly surprised about what levels are under 30 Lux.
In the evening our living room can be kept the way we usually have it which is nice for myself and my family since that is when everyone is home.
In the day time I will have to cover some windows but it is nice to know I can uncover them for the evening.
I am a person of extremes so this is very helpful for me. No guess work!!!! If anyone is interested I bought the light meter on ebay for $35.00 including shipping.
I have eliminated D foods 4 day/week now. I will go to 5 next week and then I am starting the protocol. I am still in the sun when it is out.
I have had another sun flare at work. I was close to natural light and working at a white counter with white paper. I went home that day with a terrible headache. Since then I have worn my NOIRs doing this work and I haven't had a problem.
Fortunately this is something that I do in June only so I won't have to deal with it for a year. Then I can decide if I can handle it or not. Fortunately I work in a very supportive environment and adjustments will be made for me.
Blessings to all!
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 221 |
| Status: |
Online
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Posted: Thu Jun 19th, 2008 17:31 |
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Please remember that 30 lux means 30 lux artificial light, not sunlight! You want NO sunlight coming in the house, if you want to go without your Noirs and skin protection. 30 lux from an incandescent bulb is fine for unprotected exposure.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Maureensew
Member
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Posted: Thu Jun 19th, 2008 20:52 |
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Knochen, Thank you for the clarification!
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Mon Jun 23rd, 2008 16:32 |
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Would it be possible for someone to let me know through PM or on this thread if I have received acceptance into the study site?
We have had problems with our computer's security so we have increased our security program. The responses I had to my original registration and application request were prevented from going to my email. I am wondering now if a response from my application will not be received at all on my computer.
I am 1 week away from starting the MP. I have olmesartan 40 mg timed release, 20 mg immediate release, 25 mg minocycline. I have everything I need for light protection and a variety of activities to do while I am inside. I know what I need to do to make my house 30 lux.
I am going to blow up the symptoms charts to use so it will be easier to see. I have received DVDs which I will watch this week. I am excited to get started and see what this brings.
Blessings to all on this journey! Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Julia
Advocate (on leave)
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Posted: Mon Jun 23rd, 2008 17:20 |
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| Maureen, I've passed on your contact request to Admin.
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 134 |
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Posted: Mon Jun 23rd, 2008 21:41 |
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| Application has been received thank you. Our clinical study is currently not accepting new members. As vacancies occur, we will admit subjects based on the application. Thank you, Barb ...
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Maureensew
Member
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Posted: Thu Jun 26th, 2008 02:53 |
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I spoke to my doctor today about joining the professional site and she said yes. I watched the DVD with Dr. Blaney talking about how to approach a GP. It was very helpful.
I assured my doctor that I feel very confident to be able to follow the guidelines of the MP as layed out on the website. I will just need her for unforeseen problems that may arise.
If such an occasion should come up I will go to see her and she can access the professional site for help for me.
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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