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headsuppoka
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Posted: Fri Mar 28th, 2008 08:16 |
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Hi
I have been wondering, what level of illness is required before one thinks about using the MP? I really do suspect I have th1 problems as I am a celiac and have been experiencing mild fatigue and chronic unexplained sore throats/infections for the past 2 years. According to doctors I am healthy from their test results and am by no means on my death bed. I have enough health to live a productive and active life.
However, what worries me is that I am only 20 and even If I still continue to live in this fashion, my condition might deteriorate badly by my 30s.
So before I think about getting tests done or doing a therapeutic probe, is this worth doing and are there any people on this program who weren't terribley ill who have had success? Also can one with less symptoms and illness expect quicker results and less photosensitivity?
Thanks!
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Julia
Advocate
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Posted: Fri Mar 28th, 2008 13:05 |
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Hi Headsuppoka, and welcome!
We haven't a whole lot of experience of less sick folks on the MP, as by the time they're researching on the internet and find us, they're usually pretty desperate, and fed up with doctors being unable to do anything.
Nonetheless, I can think of some, and yes, some of them had an easier and shorter ride. In fact, when I tell you that the moderators have had debates about whether the prophylactic use of the MP should be encouraged for those who are still apparently healthy, you'll get the picture!
If you can find a doctor who will prescribe the MP for you, even as a therapeutic probe, go for it. The D tests will supply all the information you need.
Is the MP an Applicable Treatment for my Disease?
D-Metabolites Tests
Hypervitaminosis-D Symptoms
Celiac disease
Julia 
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Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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Claudia
Member
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Posted: Fri Mar 28th, 2008 14:36 |
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all i can say is: I wish I had started the MP when I was 20!!! To think of all the suffering I wouldn't have gone through.... But more importantly, I know that I have passed this on to my children. If only I could have known and made myself well before I had them...
By all means - get your D-levels tested. If you suspect you have Th1 disease, you probably do. Because the pathogens are passed on in families, and the rates of infection have risen sharply over the past 50 years especially (since the use of antibiotics has been common) it is "snowballing". Each generation is getting sicker, sooner.
Take my family for example. My mother slowly developed COPD (having been a heavy smoker for 30 years) but generally enjoyed good health into her late seventies. I had chronic sinus problems starting in high school and arthritis was starting in my hands by 25. By 50 I was a complete wreck. My daughter, born when I was 34, developed chronic inflammatory problems and immunopathology when she was 8! She is now 20 and I have warned her to address the problem before she thinks about starting a family... or what chance would her babies have?
Wishing you Good Health!
Claudia
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MP from March 2006; Now in Phase III; Dx Thyroiditis; arthritis; eye irritation & glaucoma; history of CFS (1988-92);Kidney & bladder probs. Making steady progress toward recovery 
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headsuppoka
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Posted: Sat Mar 29th, 2008 02:32 |
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Nonetheless, I can think of some, and yes, some of them had an easier and shorter ride. In fact, when I tell you that the moderators have had debates about whether the prophylactic use of the MP should be encouraged for those who are still apparently healthy, you'll get the picture!
Hi, do you have any examples of this? or links to the discussion.
Thanks
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Julia
Advocate
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Posted: Sat Mar 29th, 2008 09:27 |
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Parts of members' stories are in the Phase2/3 forum, which is hidden from public view in case over-enthusiastic members try to go too fast by using the information on the Phase2/3 meds  - when you get there you're closely monitored and your recommendations individualised by the medical moderators.
Try the Success Stories and the Phase 1 Alumni Forum.
See Grace's answers to Cpass's questions on this forum, where she mentions her son.
Julia
____________________
Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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headsuppoka
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Posted: Mon Apr 14th, 2008 03:01 |
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went to lab today and attached the note to say the d sample has to be frozen when transported etc... the receptionist said they will do the test on their terms (did not specify if they did freeze or didn't). when I got the blood test done my vitamin d-sample was wrapped in aluminum foil.
can I assume that a reasonable blood testing company will not mess the result up?
tks.
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Julia
Advocate
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Posted: Mon Apr 14th, 2008 09:05 |
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Headsuppoka,
There should have been two vit D samples, one for the 25-D test, which doesn't need freezing, and one for the 1,25-D, which does. What lab was this?
Julia
____________________
Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
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headsuppoka
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Posted: Mon Apr 14th, 2008 10:53 |
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arg. well my doctor ordered several other blood tests to be done along with the vitamin D ones.
they took 3 samples of my blood and covered one in aluminum foil. the lab is called medlab (from new zealand)
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JRFoutin
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Posted: Mon Apr 14th, 2008 13:10 |
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Headsuppoka,
It is common to have more than just the D metabolites blood testing. There is a list of "other" tests, some which are supportive and helpful markers as you begin the MP. You should ask your Dr for a printout of test results and you can keep these in your personal MP file for future reference.
What do my lab tests mean? Many blood tests discussed.
How often should I test D levels? What are the target numbers?
Which diagnostic tests do I need?
Sometimes those in and out of the US are not able to get the sensitive 1,25D test done according to Quest diagnostic guidelines. If you have done all you can do with where you are and what your doctor and lab can and will do, then that is all that can be expected. Astute nurse moderators on the study site will be able to help you sort through your results when you post them there.
Policy regarding posting lab test results
Preliminary test results (for Comment)
Also, your options for a therapeutic probe with the MP should not be limited.
What is a therapeutic probe?
Best to you Headsuppoka--Janet
____________________
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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headsuppoka
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Posted: Tue Apr 15th, 2008 23:52 |
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arg. my doctor is completely useless. so sick of not being taken seriously just because I look healthy on the outside.
im going to try a therapeutic probe. how can i get benicar in nz???
Last edited on Tue Apr 15th, 2008 23:54 by headsuppoka
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JRFoutin
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Posted: Wed Apr 16th, 2008 00:11 |
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Headsuppoka,
Try Medication Purchasing Strategies. I highlighted "Zealand" so you could find it down at the bottom. Good information.
Some doctors are quite busy and have a routine that is comfortable for them. Change means a whole new business case sometimes and that might not be possible overnight for one doctor, or for an industry. Your doctor can still monitor your health and Rx required medications. You must do your part and learn.
You may find that thoughtful consideration of a single document at a time will help your Dr learn more over the span of your patient/Dr conferences than a volume filled library new data. Choose each single document according to your specific need set at a time.
Best to you Headsuppoka--Janet
____________________
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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headsuppoka
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Posted: Wed Apr 16th, 2008 02:07 |
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| Im still a bit confused because my doctor today said that a prescription from NZ couldn't get me benicar and was meaningless??? not sure how purchasing online works.
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JRFoutin
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Posted: Wed Apr 16th, 2008 02:21 |
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Headsuppoka,
Your doctor may not know what others have discovered after hard work and effort. His information sources may not have been updated recently. Hard to know why there is a discrepency, but it is worth looking into the solution set offered to see if your options are as stated on the link I gave you.
Purchasing online still requires a script from your Dr. The last few posts on this discussion is about how to scan or fax the script to the pharmacy that sends through the mail after you fax or send a digital image of the script --and-- pay via electronic funding source first (credit card or similar).
Did that help?--Janet
You may wish to make contact with others in your area on this site or the MP site by private message.
____________________
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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headsuppoka
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Posted: Thu Apr 24th, 2008 23:47 |
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so I have just sourced benicar from germany and have recieved this info in a reply from the supplier.
"Yes, it contains olmesartan medoxomil.
There are two brands available in Germany: Votum (Berlin Chemie) and Olmetec (Sankyo)"
which one should i get??
thanks
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JRFoutin
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Posted: Fri Apr 25th, 2008 00:37 |
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Headsuppoka,
Olmetec (Sankyo) is original maker. That is a detail you and your Dr can use to determine variables and options for your decision.
Best to you Headsuppoka--Janet
____________________
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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Aussie Barb
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Posted: Fri Apr 25th, 2008 00:44 |
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HS
suggest you PM Member Guss Wilkinson at the MP site before you order from Germany into NZ..
Guss posted:
"In the beginning of December, I started running out of Olmesartan (Benicar) and I purchased my next lot on line from Germany, as per usual. This time it didn’t arrive and I was just about to send a nagging mail to the German Pharmacist when a note arrived from the NZ customs saying that as I had ordered more than three months supply of the Olmesartan (it was three months supply at 3-times per day, but their manual must have specified a 1-tablet per day max dosage). The NZ customs were going to refuse entry for my medication and return it all to sender…it was part of a new initiative to tighten up on the importing of prescription medicines.
It has taken me until now to find and get hold of the right person to put across my argument to and, to my surprise, after doing some investigation, they granted me permission to import the Olmesartan.
So, the upshot of it is that I have not been doing the MP at all for four months." <<<<<
imo Before ordering, it will pay to check with Guss re the options for NZ MPers.
all best, Barb ...
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Claudia
Member
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Posted: Fri Apr 25th, 2008 03:22 |
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Can he get his NZ prescription filled in Australia? Since we have some cooperative arrangements between the countries regarding medical needs, I thought it might be possible...
C
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MP from March 2006; Now in Phase III; Dx Thyroiditis; arthritis; eye irritation & glaucoma; history of CFS (1988-92);Kidney & bladder probs. Making steady progress toward recovery
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headsuppoka
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Posted: Sat Apr 26th, 2008 06:34 |
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Thanks for the replies. I have decided to go with Olmetec (Sankyo). I'll be getting benicar from Claudia wrote:
Can he get his NZ prescription filled in Australia? Since we have some cooperative arrangements between the countries regarding medical needs, I thought it might be possible...
C
Thanks for the reply. Im not sure what you mean by this though?
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Claudia
Member
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Posted: Sat Apr 26th, 2008 12:17 |
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I'm not sure what's possible... but we can fill Rx by mail order here and I thought maybe you could, too, and it might be cheaper & more reliable than from Germany?
-C
____________________
MP from March 2006; Now in Phase III; Dx Thyroiditis; arthritis; eye irritation & glaucoma; history of CFS (1988-92);Kidney & bladder probs. Making steady progress toward recovery
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headsuppoka
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Posted: Mon Apr 28th, 2008 10:18 |
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claudia: so are you talking about me sending my rx to aussie to get benicar from compoundia??
arg:
Bad news: I just got the information that we are not allowed to accept non EU prescriptions any longer. My boss just informed me about that change.
I apologize that we can not be of further help.
--- from the german international pharmacy
looks like im back to the drawing board.
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