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wwspic36
Member in Phase 3
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Posted: Thu Oct 28th, 2004 03:54 |
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I have been on the protocol for about 100 days. I felt good at the beginning with only the Benicar. I added the minocycline slowly after 30 days. I have been taking a full dose now for about 50 days. I sleep soundly. I have muscle and joint pain especially in my right knee. My face and neck gets hot for several hours at a time then goes away. I feel weak often and have trouble exercising. I have more symptoms now than when I started the protocol. I have avoided sunlight and vitamin D. My blood pressure is normal. I've taken minocyline before but the symptoms returned after I finished with it. My symptoms are night sweats, fatique, headaches, hives, flush skin, sore muscles & joints, weight gain, etc.
My doctor thought that I was depressed. He was not familar with the Vit. D tests. I do have an elevated C reative protein of 4 down from 17! I have seen a disease specialist, cardiologist, rheumatologist, gastroenterologist, dermatologist and of course my doctor who is an internist. All of them have told me that I wasn't sick and not to worry. I have continued to feel worse. I have been sick since 2/03. wwspic36
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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Aussie Barb
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Posted: Thu Oct 28th, 2004 06:34 |
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ww,
You may have seen it yourself, but I am letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other Important new documents as well.
I am letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy...
we need to know that you are following all aspects of the MP fully, before we can comment any further.
Do you have & wear the NoIR glasses?
are you cutting D thru sun / lights/ supplements / diet?
Can you please fill in your signature line too please as we need to know your Dx & Rx you are on.. so we can give you the best care..
Thank You, Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Sat Oct 30th, 2004 21:38 |
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wwspic36 wrote: I would like to begin the second phase of the MP. I'm taking 40 mg Benicar t.i.d and 100 mg Minocycline every 48 hours.
I don't know how to fully complete "my signature line" as you have requested. I'm also taking a baby aspirin every day.
My doctor would not write a prescription for Benicar for three times a day. He is willing to request blood tests while I am on the MP.
I did pull up the revised phase I sheet and will take it to him for the proper blood tests. I go back next month.
I have been wearing sunglasses that I bought at Walgreen's over my prescription bifocals while driving. I work in an office and am rarely outside. I've been wearing my sun glasses while using the computer too. I did have some prescription sun glasses made recently but they are too dark and I don't like them. I'm going to order some NOIR glasses soon.
Is there any thing that I neglected to tell you? Thanks, wwspic36 :-)
WW,
Thanks for contacting... here is INFORMATION TO INCLUDE IN YOUR SIGNATURE LINES Certain medical information required
We need to address some basics first.
* why are you needing the aspirin? and are you on any other medications please tell us too, thank you W..
* Have you had your MP blood tests?
The NoIR glasses are essential for outside & if you've not been wearing them your MP may have been compromised. I'm pleased to note that you have worn your sunglasses for the pc 
* It would be good if you will familiarise yourself with the whole MP Board please and read all the information that is here so that we know that you understand the MP enough to proceed to phase 2...
* This is very important for us to know that you do understand and have read the information and have done phase 1 with the full Protocol as outlined in the guidelines, NoIRs eg... before proceeding to phase 2.
* The other thing is that you will need to have extra Benicar on hand in case of needing it Q4H for strong herxing.
It sounds from your first post as if you are still herxing well, so would not be moving to phase 2 till you are no longer herxing on 100mg mino.
* Once you get your NoIRs you may find that you go thru an adjustment... & you may herx more strongly....
* So once you have your NoIRs, keep in touch with us about your experiences.. you may need to drop the mino dose some if you are herxing too strongly on the 100mg then?
we look forward to hearing more info from you then W thanks, Barb.....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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wwspic36
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Posted: Thu Nov 11th, 2004 20:01 |
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| I received my NOIR clip on sunglasses today and unfortunately they were too large. I'm going to send them back and order a size 17 not 21. I noticed that the sunglasses were darker than the sunglasses I have been using even though they were the middle shade, number 401. I think that I have not been blocking out infrared and ultraviolet adequately. I have started wearing my baseball cap indoors more to reduce the light on my face. I've been taking the Benicar tablets three times a day for four months and one 100g minocycline capsule for about 3 months. My forehead, face and neck isn't as warm to the touch as before. My skin isn't as blotchy as before. My headaches have subsided. I sleep all night, and I sleep more soundly. In fact last week I woke up refreshed with some energy. That hasn't happened in almost two years. I have a doctor's appointment next week. I've saved the vitamin D test from the web site and hope that he is willing to order the blood test this time.
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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Aussie Barb
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Posted: Fri Nov 12th, 2004 21:43 |
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Thanks for posting us an update W,
and good to hear you are noticing improvement. When you get those NoIRs organised, we will better see what you are up to on full MP.
there are still a couple of comments from previous posts, above this one, which would also be helpful for us, if you could fill us in please W.. thanks..
If you have any questions, please do not hesitate to ask..
best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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wwspic36
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Posted: Fri Dec 3rd, 2004 02:45 |
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My lab tests were available today. My Vitamin D, 25-hydroxy is 27, my vitamin D,1,25 dihydroxy is 44. And that is after over four months of Benicar and three months of minocycline! Lately I've had more energy, gotten more done at home and work. I sleep more soundly and for longer periods. For about a year now, I've had traces of blood in my urine. That seem to have resolved itself with two recent lab tests showing no blood. My night sweats are less frequent, and my skin is not as warm to the touch. I'm to put skin lotion on my face without it burning. My potassium level is 4.5 without any real diet changes.
I do have knee pain at night after work or working out for about two hours every other day. My right side hurts for about ten minutes a couple times a day. My eyes have become increasingly sensitive to light especially auto headlights or bright overhead indoor lights. My Noir glasses have not arrived so I'm still wearing my Walgreen's Solar Shields. I think that I'm ready to begin phase two. :-)
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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Posted: Fri Dec 3rd, 2004 08:18 |
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Let us know how you feel after you've been wearing your NoIRs for awhile. Sometimes they change the symptoms. I'd also like to encourage you not to work out for such a long interval (two hours). This may be putting to much stress on you inflamed knee.
I'm glad to hear that you are doing so well.
Best,
Meg
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wwspic36
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Posted: Tue Dec 14th, 2004 03:35 |
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My NoIR glasses came last week. I have a long face so I ordered the 701 glasses and the 901 glasses. I found that the 701 glasses were too snug so I kept the 901 glasses and returned the 701 glasses for a 907 pair. I've been using the 901 glasses all day long. They are especially good at work while using the computer and with fluorescent lights. They are much better than my Walgreen's solar shields!
I have trouble with my knees every two or three days. One or the other of my knees becomes inflamed and hurts. Then after about two hours the pain goes away, and it feels better. Also every two or three days my head and face gets hot and after about two hours; it goes away; and I feel better. Also I have a pain in my right side that comes and goes. Because I know that these pains will go away I usually slow down and wait for them to pass.
I'm starting my sixth month on Benicar and my fifth month on Minocycline. I go back to my doctor the middle of January.
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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Aussie Barb
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Posted: Tue Dec 14th, 2004 04:36 |
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Dear WW
have a look @ this FAQ How do I know if I'm ready for phase two?
and >> IMPORTANT MESSAGE FOR MEMBERS IN OR READY FOR PHASES 2 AND 3
and see what you think.. best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie
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Posted: Tue Dec 14th, 2004 22:06 |
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wwspic36,
The transient symptoms sound like herxing. If you are still herxing from the mino, you may not be ready for Phase 2 yet.
It may help to journal, if you aren't already doing so, to assess the timing of your symptoms to mino dosing.
Editing here: Oops... didn't realize you were on mino alone for so many months. It's prob time to move on. 
Last edited on Thu Dec 16th, 2004 03:13 by Reenie
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Posted: Wed Dec 15th, 2004 05:15 |
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ww said, "I'm starting my sixth month on Benicar and my fifth month on Minocycline."
That's a long time on minocycline monotherapy. Dr. Marshall recommends that you move to phase two even if you have to reduce the mino for a little while. It's important to add a second antibiotic after so long to avoid the potential of resistant species.
I'll send you a questionnaire for phase two.
Best,
Meg
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wwspic36
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Posted: Mon Jan 10th, 2005 01:20 |
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I when to my doctor on 01/07/05. He said my blood pressure was normal. He was concerned about my potassium level at my last visit six weeks ago. He indicated that it too was normal at 4.5. He said not to return for three months. Prior to that I had so go back every 6 weeks. The vitamin D levels were taken 6 weeks ago and are posted in my signature line. My ratio of 1,25 / 25 is 1.6.
I have been adding the second antibiotic for twenty days now. I have noticed that I an tired and need to rest often. I have pains in my left knee. I have avoided light and wear my NoIR glasses almost all of the time especially while watching TV or on the computer where I can't control the light. I'm more aware that I'm taking medicine. My skin seems flaky and my scalp itches. My eyes seem dry, and I use drops often. My mouth seems dry, and I often carry a bottle of water with me. I've been sleeping longer in the morning and feel tired upon arising.
I've shared with others about the Marshall Protocol. All I seem to be getting back is grief. A co- worker told me that my bones would be brittle because of my fasting from vitamin D. Another friend told me that I wore the glasses just for attention. And another told me that I couldn't take antibiotics for long periods. I may quit sharing the Marshall Protocol with others; however, I'm excited that finally I can get healthy and stay healthy again!
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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Aussie Barb
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Posted: Mon Jan 10th, 2005 01:37 |
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Hi W,
thanks for posting. good to see you again... and to hear of your herxing symptoms > which means progress. good work with the NoIRs!
and as for people understanding.... it is not they who are sick and who have had no means whatsoever for relief.... until now with this breakthru / change in understanding / looking outside the box, for which we are so thankful.
we are your new friends, on the same page.... come and talk to us when the going gets rough.
Take care of yourself.. Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie
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Posted: Tue Jan 11th, 2005 03:34 |
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wwspic36 says, "I've shared with others about the Marshall Protocol. All I seem to be getting back is grief. A co- worker told me that my bones would be brittle because of my fasting from vitamin D. Another friend told me that I wore the glasses just for attention. And another told me that I couldn't take antibiotics for long periods. I may quit sharing the Marshall Protocol with others; however, I'm excited that finally I can get healthy and stay healthy again!"
THANKS for sharing that. I'm sure someone else will be encouraged by your tenacity and perserverance.
I've gotten some "grief" too, for sharing the MP. Oh well... "too bad, so sad" for those that won't/don't want to help themselves, while we recover!
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wwspic36
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Posted: Thu Feb 17th, 2005 03:49 |
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I'm in the second phase and ramping on the second antibiotic. I've noticed that I'm restless and jittery. I'm sleeping less going to bed later. My left ankle is tight and stiff. I broke it three years ago. I hurt so much that I went back to the surgeon because I thought that maybe the pins and plates were loose. He assured me after looking at a new X ray that it was perfectly fine. I get a shooting pain through my right foot up to my backside when exercising or at yoga. My skin gets red especially my neck. My mouth and teeth hurt. My scalp itches. My stomach hurts, and I have occasional heartburn, a symptom that I never had before. My eyes have become very sensitive to bright lights. I even wear my NoiRs when walking the dog at night. I don't like the glare off the street and yard lights. My right wrist hurts while typing, and deep inside my chest my heart and other organs hurt on occasion. I'm able to go to work but that is about all I can do. But after all of those complaints, I do have a new feeling of well being that I haven't experienced since I got sick three years ago.
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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Aussie Barb
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Posted: Sat Feb 19th, 2005 11:55 |
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Hi W
take care, dont push those abx too fast.. so glad you have a feeling of wellbeing.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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wwspic36
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Posted: Sun Mar 15th, 2009 08:57 |
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"I've been on the MP for over 5 years. I got sick on February 12, 2003. I was 54 years old then. I have good health insurance and consequently had over $40,000 of tests done over a 1 1/2 year period. Finally, a infectious disease specialist told me that I was faking my illness to get attention. I thought that my only future was to quit my job and go home to die. I turned to the internet.
I discovered the web site from Trevor Marshall, PHD. The protocol was in its infancy but seem to make sense. I asked by family doctor to let me try it. He looked it over. He said it was a lot safer than the prescriptions that I was currently taking and a lot cheaper. He let me try it. That was the turning point.
I recovered very slowly while taking Benicar and carefully adding the low dosed antibiotics. I learned how to avoid the outdoors and bright lights. I learned how to cover up completely with a hat and protective gear. I ordered the special glasses. I lower the wattage of the bulbs in my house. And I got better.
I have had rashes at the base of my neck. I've had hot joints. I've had hot lymph nodes. I've had terrible back pain. I've had several teeth hurt. I've had bad headaches. I've had muscle and joint aches. I've had the skin on my right palm peel off. I've had draining of mucus in my right ear and on and on. However after each episode, I've healed for good.
I'm now working full time in my profession as an accountant. I just registered for a class with a co-worker who is 30 years my junior that meets every Saturday. My boss told me that my writing and organization skills have improved. He gave me my first superior rating since I got sick. I've lost 35 pounds at a weight watchers group.
I hired a personal trainer and added muscle to my frame especially my upper body. He has me running 12 miles a week in addition to two workouts with weights. He has me eating egg whites and chicken for breakfast!!! My life is good. Surely I could have recovered for some other reason than the Marshall Protocol. But when I started I felt so bad that I wanted to die. I choose to think that I was Trevor Marshall, PHD who brought me to where I am today." Last edited on Sun Mar 15th, 2009 14:20 by wwspic36
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Fatique, headaches, hives, flush skin, sore muscles & joints 125D44 MP1Jul04 Ph2Aug04 Ph3Jul06 NoIRs lite exp r/t to commute covered 25D13Jul07
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