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Claudia
Member
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Posted: Mon Apr 28th, 2008 12:30 |
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| Yes, that's what I was talking about... I have no idea if it is possible - just a thought. If you were to travel or live in Australia, I was told that NZ residents have reciprocal medical (Medicare) benefits, so I was thinking maybe something could be done to fill your prescription here.
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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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| Joined: | Fri Mar 28th, 2008 |
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| Posts: | 37 |
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Posted: Sat May 3rd, 2008 12:09 |
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I have ordered benicar and am very close to starting the MP. I have one more question.
Is it normal for people suffering TH1 disease to feel much better at the night time vs the day time? I mean for example all my symptoms are about 1/3 what they are at the night time compared to the day time. I suppose this is photosensitivy correct?
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Julia
Advocate
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Posted: Sat May 3rd, 2008 20:00 |
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Headsuppoka,
There are probably several factors in play here, for example, timing of food/drink/supplements, sleep, exercise. But certainly light exposure could have a lot to do with it. Oddly, some pre-MP members report feeling better in sunlight (which is acting as an immunosuppressant and preventing bug-killing, so there's no immunopathology), while others feel better out of the light.
Why are my symptoms more intense after exposure to light &/or Vitamin D?
Pre-MP checklist:
-Review Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol
-Read the Safety Warning
-Print out the Phase One Guideline and study it
-Read Frequently Asked Questions About Benicar
-Order NoIRs sunglasses(do not start taking Benicar without them)
-Discontinue medications recommended to avoid
-Discontinue alternative treatments and most supplements
-Obtain an adequate supply of Benicar
-Be sure you have the right kind of Benicar
-Assess your level of 25-D (See The Importance of Reducing 25-D) There is no level of either 25-D or 1,25-D which must be achieved before you begin the Marshall Protocol.
-Modify your environment. (See How to Avoid Sunlight and Bright Lights)
-Obtain a 30 day supply of minocycline
-Read Why and when do you recommend taking minocycline frequently?
-Reduce your 'workload' if possible so you can stay indoors during daylight hours.
-Read Helpful Hints For Those on the Marshall Protocol
-Enlist the support of family and friends. See Personal, Family, Relationship Tips
-When you're about to start Benicar, start a new topic ('Headsuppoka on Benicar') in the Benicar only Forum. This becomes your Progress Report, and once you've started the MP, all your medical and lifestyle questions should be asked there.
Until you start Benicar, please continue to ask your questions here
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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Aussie Barb
Research Staff
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 104 |
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Posted: Mon May 12th, 2008 23:45 |
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Guss has now posted re Benicar to New Zealand:
I finally got Olmesartan through customs – unfortunately, one of my orders got lost in the post so that was $700 that I had to chalk up to experience.
For those of you importing Olmesartan (Benicar or Votum) privately into NZ, you need to know that customs will return the package to sender without informing you if you have ordered more than three-months supply @ 40 mg per day.
There are three options to get around this:
- Get your GP to import the medication for you (best option – as there are no restrictions for doctors)
- Order only 98-tablets per time
- Talk to MedSafe and get them to approve you as an importer – you will need to provide heaps of documentation from your GP for this one.
My order came through last Friday and I put myself right back onto the MP. Guss..
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headsuppoka
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Posted: Tue May 13th, 2008 04:31 |
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thanks for the reply. I am ordering benicar in loads of 84tabs, the first load should be here in a week or so.
also I have cut all V-d from my diet. im kind of surprised my symptoms have gone from:
10 being worst
sore throat 5
fatigue 6
excercise tolerance 8
mental capacity 5
motivation 5
to
sore throat 2
fatigue 4
excercise tolerance 6
mental capacity 2
motivation 3
just from cutting d from the diet over the past two weeks. also my eyes seem photo sensitive when outdoors.
this is pretty much a successfull mini-probe correct?
Last edited on Tue May 13th, 2008 04:34 by headsuppoka
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Julia
Advocate
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Posted: Tue May 13th, 2008 13:00 |
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Headsuppoka,
When your olmesartan arrives and you start your Progress Report, it would be good to copy this list into it. Yes, it seems your mini-probe shows you're on the right track
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: Wed Jun 11th, 2008 01:47 |
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Hi again.
MY first shipment of olmesartan medoxomil has arrived. I have one question before I start benicar.
On the outside of the packet it says
"each film-coated tablet contains 40mg of olmesartan medoxomil. Also contains lactose monohydrate"
is that supposed to be there? thanks
btw It also says Manufactured by Sankyo Pharma GmbH
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headsuppoka
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Posted: Wed Jun 11th, 2008 01:53 |
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and on the patient information sheet it also says
"olmetect tablets also contain microcrystalline cellulose, lactose monohydrate, magnesium stearate, titanium dioxide, talc, hypromellose, low-substituted hydroxypropyl cellulose and hydroxypropylcellulose."
"marked c15 on one side and plain on the reverse".
normal??
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natalie17
Advocate
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Posted: Wed Jun 11th, 2008 02:30 |
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Hi Headsuppoka,
As long as it does not say it contains "Hydrochlorothiazide" anywhere I think you're fine.
See The right kind of Benicar to be sure.
Take care,
Natalie
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Severe CFS/ME already heading back to health thanks to the MP (into my second year..) Natalie's Story | ABCofMP
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headsuppoka
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Posted: Wed Jun 18th, 2008 06:34 |
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thanks for the response natalie that was very helpful.
I am starting benicar tommorow and have one last question:
I am on holiday for the next 4 weeks so it will be very easy to avoid nautral light in my home, I have also purchased 4% amber noirs incase I have to go outside.
I spend 8-10hours a day working at the computer, do I have to wear sunglasses? I am not expecting to be extremely light sensitive as im not very ill, so if I get no symptoms can I just not wear them while working?
thanks.
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Julia
Advocate
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Posted: Wed Jun 18th, 2008 13:43 |
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Headsuppoka,
You might be surprised at how sensitive your eyes become. Turn the brightness of your monitor down. I found ordinary polaroid sunglasses were just right for the computer, but many members wear their indoor NoIRs.
There has been a change of policy in the running of the MP, due to moderator overwork. Please note the information in this link: MP Memberships Temporarily Closed. As you haven't started on Benicar yet, with a Progress Report in the Benicar only Forum, you'll have to make a formal application to be a member of the MP study group.
Whether you're accepted or not, please make sure your doctor joins the private forum for Health Professionals, where s/he can discuss the MP and access the Phase 2/3 information.
Best wishes for your MP journey 
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: Wed Jun 18th, 2008 20:24 |
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Hi,
Thanks for the reply. What I am saying is, if I start benicar and get no symptoms from the computer it is not going to hinder my progress on the MP if i dont wear sunglasses inside correct?
I have also sent in an application to join the study group too.
Thanks again
Last edited on Wed Jun 18th, 2008 20:24 by headsuppoka
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JRFoutin
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Posted: Thu Jun 19th, 2008 04:12 |
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Headsuppoka,
I think what Julia said has merit.
Simple logic says the worst case scenario for due caution with light would be that one is really not light sensitive and no harm done by making adjustments. (Better safe than sorry.) It might take a while to rule out light sensitivity, or you can find out you are light sensitive immediately, but I'd at least recommend giving all of phase one full due caution.
The worst case scenario for ignoring light cautions could be twofold:
1. One gets smacked with severe light sensitivity that scrambles neuro cognitive function and/or embelishes responses enough that they are hard to manage for a period of days (some spell it "P-A-I-N" and others just give several significant symptoms a high number on a scale of 1-10).
2. One could be tagged as not capable of following directions or instruction.
Many have felt that light sensitivity won't happen to them, but finding out the hard way has consequences. Please, for you own sake, give some credence to those who have watched many crash and burn with the same feeling that they might be different than the rest.
Immunopathology is not like traditionally-practiced palliation which is expected to make you feel better immediately. Careful attention to clues and details can provide tangible benefits.
Best to you Headsuppoka--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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headsuppoka
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Posted: Thu Jun 19th, 2008 04:32 |
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thanks for the reply, I really appreciate it.
I am planning to spend my 4 week holiday living in pretty much a cave. If I have to go out I have the 4% noirs and will wear adequate protection. I am not doubting that I will gain some photo sensitivity (in fact i am expecting an increase), so to rephrase myself :
the effects of stairing at a low brightness, antiglare computer screen whilst in complete darkness is nothing compared to say, sunbathing? And If I get no neuro problems then it should be safe/tolerable?
The last thing I would want is to be tagged as not capable of following directions or instruction. This is not what im trying to do. I am very inquisitive and do not know what to expect that is all.
Thanks
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JRFoutin
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Posted: Thu Jun 19th, 2008 04:37 |
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From Julia's links above:
Modify your environment. (See How to Avoid Sunlight and Bright Lights)
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: Thu Jun 26th, 2008 16:32 |
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Im just starting mino now.
my 100mg pills are in capsules. how do i split them into 25mg lol. dont want to go to the doctor again to get another rx and pay another $60 for mino.
help?
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headsuppoka
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Posted: Thu Jun 26th, 2008 16:33 |
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and if anyone is interested definately had a reaction to benicar.
Day 1-2 felt great
Day 3-5 felt rise in symptoms ( chills, very sore throat, numbness, headache)
day 6-7 just stabilising now.
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JRFoutin
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Posted: Thu Jun 26th, 2008 17:00 |
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Headsuppoka,
Good for you!
Probably what you are observing is not so much "reaction to Benicar," which sounds like Benicar went in and you got a negative outcome.
I like to understand it better as a postive outcome of significant importance which acts immediately to verify the predictable science behind the Marshall Pathogenesis and Marshall Protocol: "Benicar is already starting to work on enabling my compromised immune function. The outcome was pathogen+infected cell eradication, producing notable xyz response(s)." Suggest also reading the Information posts at the head of the Benicar only Forum.
Of course, the study site has a much more complete and streamlined reporting system, with valuable dialog with Nurse Moderators.
Although your new beginning is just the front end of a major reconstruction job, in time you will also notice there are no more responses in some areas that once were broken, because one's immune function won't have any problems to fix in that area any more. (I like to spell that "W-A-H-O-O-!").
You might find a compounding pharmacist that can help you divide capsules better. You also might want to ask for tablet minocycline in the future, as a pill splitter works pretty quick and efficiently. Other options:
How do I divide the minocycline when the capsules only come in 50mg? CAUTION: Please be sure to be measuring the dose carefully, shaking the FULL contents of the capsule right out to divide accurately.
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: Mon Jun 30th, 2008 15:26 |
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thanks for the link to the thread on dividing capsules jrfoutin.
i am not yet a member of the study site but i will continue to post my progress here if anyone cares:
I am 12 days in and have taken 2 does of mino 25.
after the first dose I didnt feel any herx. after the second dose i woke up the next mornig feeling a little run down with a sorer that usual throat. i also had a few flu like aches. this lasted for about 8 hours.
right now I feel so damn good:
fatigue: 2
excercise intolerance: 3
sore throat: 1
headaches: 1-4 throughout the day
brain fog: 2
motivation: 3
i have been very diligent on cutting all vit-d and have not really been in the sun at all. i am trying to lower my carbs but am still struggling with this.
i hope my good progress continues.
Last edited on Mon Jun 30th, 2008 15:30 by headsuppoka
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Julia
Advocate
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Posted: Mon Jun 30th, 2008 20:21 |
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Headsuppoka,
Glad to hear you're doing so well
i am not yet a member of the study site but i will continue to post my progress here if anyone cares
We care very much! But we're not encouraging you to post a formal progress report here - that's not what this message board is about. Certainly you may ask here if you have any non-medical questions, or want help in finding information, but for medical support you must look to your doctor. Please make sure s/he joins the private forum for Health Professionals.
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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