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Marysue
Member
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Posted: Fri Sep 26th, 2008 14:16 |
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Hello all--
I am new to the MP and grateful for all the information. It has brought a whole new level of understanding to my condition.  I was diagnosed with CFS 13 years ago and thought I had managed it all well until this past summer.
I've had increasing heat/fevers cycling for several months and also had lots of hormonal fluctuations. As I am now 48, I mistakenly thought they were beginning hot flashes/perimenopause. What a critical mistake! Thanks to the MP info, I now know about elevated vitamin D, hormonal disregulation, and the probable severe level of inflammation I am experiencing.
I am already lowering my Vit. D levels out of necessity--I can't tolerate the heat or sun and of course, experiencing Herx as a result. (mostly fever/sweats/chills during the night from about 3am-7am followed by gas/bloating/diarrhea during the early morning) At least I know my immune system is working.
Occasionally, I've had to get up and turn on a light to reduce symptoms which I realize may be the hormonal adjustment to dropping Vit. D levels. Other times, it's more obvious Herx symptoms that I just ride out and try to keep hydrated. Twice I've taken Ibuprofen and I also take a small amount of anti-inflammatory herbs as needed to manage symptoms.
Question: Are there any anti-inflammatories I can take that would help during this pre-MP phase? How can I best manage my symptoms during this obvious severe inflammation while continuing to prepare for going on the MP?
I am already reading a ton of info on the websites, printing off info for my doctor, etc. My first priority is to get the blood tests when I go in next week. Obviously, I am concerned about managing this because it may be weeks (months  ?) before my D levels are low enough to start.
Marysue
____________________
"I believe wellness starts in the mind--if not my mind, then someone else's!"
Thank you Dr. Marshall, ARF, and everyone who supports the MP websites for all the knowledge help and support.
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Julia
Advocate (on leave)
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Posted: Fri Sep 26th, 2008 16:06 |
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Hi Marysue,
See Do I need to get my 25-D down before I start the MP? which says in part,
There is no advantage to waiting to start the Marshall Protocol until the level of 25-D has been reduced by Vitamin D deprivation. This could take many months in some cases and during that time, Benicar and antibiotic/s will enable the innate immune system to begin killing the CWD bacteria. Be very careful of the increasing immunopathology as your 25-D falls.
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Pain medications has info about anti-inflammatory drugs.
It is, I suppose, always possible that you're running into menopause as well as being ill - and the dysregulation of hormones caused by Th1 disease plays havoc with normal hormonal events - been there 
As you may have realised, there are two groups of members on this site: those who are also members of the MP study (who post mainly on the main study site MarshallProtocol.com, including obligatory weekly progress reports, and receive MP advice and support from experienced nurse moderators), and those who are on the MP independently, through their doctors.
If you want to be placed on a waiting list for study membership (there is no guarantee that a place will ever become available) please see MP Memberships Temporarily Closed for instructions. We would dearly love to be able to help everyone, but we have a very small band of volunteer nurses, backed up by a very small band of volunteer advocates.
All doctors are welcome to join the private Professionals' Forum, where all the help and support they need is available, as well as access to the whole protocol from the start. Those who are on the MP independently must refer to their doctor for medical issues, and learn to search the MP 'library' on the study site to find information.
All the information you need is in the MP 'library' on the main site. Here on this site the advocates are happy to act as 'librarians' to help you find what you need to know to make your MP journey a success. Please use the search facilities first to see if your question has already been answered - see How to do a site search.
Non-members might also enjoy reading the members' informal discussion board MP-Lifestyles.org.
There is no medical support available for independents, but you're welcome to ask non-medical questions that can be answered by more experienced members. Any medical questions exclusive to your own case must be addressed to your doctor. There is no need for independents to post progress reports, though you're welcome to drop in here occasionally and let us know how you're getting on.
We are very well aware that this situation is far from ideal for independents, but the only alternative we could see was to close the whole thing down to anyone who wasn't in the study.
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information.
Essential Information About the MP - take this a little at a time!
Read, read, read... and let us know if you can't find what you need...
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Marysue
Member
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Posted: Sat Sep 27th, 2008 03:20 |
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Quick reply to say thank you for all the info. I've been reading off and on most of the day and am learning a lot more.
I noticed again today how cyclical my symptoms are and realized they may be hormonal adjustment symptoms due to dropping Vit. D. Since this part of it is new to me (I'm more familiar with Herx reactions) and the symptoms are increasing as I continue to avoid sunlight and dietary Vit. D.
I looked in the quick search for hormonal adjustment symptoms and didn't find anything. Are they listed somewhere? Also, are there any suitable ways to help the body balance hormones during the adjustment phases? I am not on any drugs and hope not to be--other than the MP. 
In the meantime, I drank some milk tonight and feel better, so I'm wondering if maybe I was making changes too fast. I hadn't thought about dealing with the photosensitivity first and then slowly wean off the dietary stuff.
Marysue
____________________
"I believe wellness starts in the mind--if not my mind, then someone else's!"
Thank you Dr. Marshall, ARF, and everyone who supports the MP websites for all the knowledge help and support.
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 138 |
| Status: |
Offline
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Posted: Sat Sep 27th, 2008 03:46 |
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| This FAQ may answer your questions: Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar? Let us know. Thanks, Barb ..
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Marysue
Member
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Posted: Tue Sep 30th, 2008 07:21 |
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Please help, thank you. Where is the information on treating a runaway immune system? I've seen it referred to , but can't find it. I think I'm going to need help with pain control so I'm going to the hospital tomorrow to get some help. I want to make sure whatever the docotr decides isn't going to make it more difficult later. I hope they can get the blood work and then the Benicar soon.
I finally discovered that most of my symptoms are alternating between severe photosensitivity and IP symptoms. We already have no IR glasses ordered and I'm nearly completely restricting light.
I'm typing this message with a shirt hanging over the computer screen and wearing sunglasses too. Sorry about any spelling errors.
Marysue
____________________
"I believe wellness starts in the mind--if not my mind, then someone else's!"
Thank you Dr. Marshall, ARF, and everyone who supports the MP websites for all the knowledge help and support.
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Julia
Advocate (on leave)
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Posted: Tue Sep 30th, 2008 20:34 |
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Marysue,
I think the link How To Manage Immunopathology has the info you need, but if not, get back to me. Runaway herx is not all that common - most of us have been able to control IP by adjusting meds.
Have you turned your monitor screen brightness down? The shirt is original  but shouldn't really be necessary!
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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