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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Mon Jul 28th, 2008 03:55 |
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Hi all,
Sometime after I was diagnosed with sarcoids I developed a right bundle branch block and later a left fascicle block. I have had high bp for years and went on benicar 3 years ago. Sarcoids also brought dry eyes and lately I've been diagnosed with Reynaud's -- in other words multiple levels of involvement. My primary sarcoids symptoms resolved about 18 months after diagnosis (fatigue and enlarged lymph nodes). Ironically I feel pretty good, jog 2 miles under 20 minutes, 3 times/week.
One of my main concerns is the risk of excessive heart / electrical system damage from rapid die-off. It seems like a lower risk path is to reduce D25 and then rely on benicar for an extended time before beginning mino.
Thoughts?
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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Julia
Advocate (on leave)
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Posted: Mon Jul 28th, 2008 11:44 |
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Hi JH,
I can understand your desire for extra caution, but please review the link you were given when you reported your D tests: When should I be concerned about cardiac symptoms?
In particular, note that it says: The MP was developed with the knowledge that anyone could have cardiac involvement, even if asymptomatic. This is why we are adamant about following the MP guidelines exactly so the immunopathology can be controlled. Read all precautions and instructions in the Phase One Guideline. Print it out so that you can check it regularly.
Sarcoidosis is a systemic disease, so although you say some symptoms are currently in remission and you feel good, it's likely that your cardiac problems, Reynaud's etc are all sarc-related, and that you will develop more symptoms as the bacteria multiply. With such a high 25-D level suppressing your immune system, your body has no way of counteracting the infection.
Information to discuss with your doctor:
Sarcoidosis Facts
"What is the Marshall Protocol?"
Simple Explanations
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
Please ask any further questions here at your own personal thread.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Mon Jul 28th, 2008 15:03 |
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Julia,
Thanks for the follow-up.
One of my hobbies is mowing on my ranch - 5 or 6 hours in the sun. Years ago I began covering-up completely because I thought I had a contact allergy with some pollen. I found the Polartec hunting mask could cover my head & neck. It works in the country where I wouldn’t be mistaken for a terrorist.  However, I also enjoy the heat. Why is heat discouraged and how serious is the concern?
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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Julia
Advocate (on leave)
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Posted: Mon Jul 28th, 2008 15:19 |
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Jim,
Please see INCIDENT RADIATION TUTORIAL.
What are the latest recommendations regarding sun/light exposure?
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Wed Jul 30th, 2008 03:53 |
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Julia,
I have been tracking my diet for the first time in a while and have been surprised by the amount of Extra Virgin olive oil -- probably 2 tablespoons each day. I also snack on black walnuts. Do you see a problem with these?
Thanks again for answering these questions!
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Wed Jul 30th, 2008 06:03 |
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JHGraves,
I use extra virgin olive oil whenever possible  -- given what is usually included in commercial salad dressings, I consider my own olive oil dressing the only rational option for a great salad (wink, again).
Walnuts are not a known source of D or other problem that I'm aware of. I've enjoyed a variety of unroasted crunchy almonds, walnuts, cashews, pecans and even an occasional pine nut as a treat during the MP.
See also:
FOOD TIPS has Links to All Food Topics
Page 2 re weight loss and appetite
MP Food Choices Simplified
http://www.mp-recipes.com/mp_recipes.html
FOODS TO AVOID / big offenders
Best to you JHGraves--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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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Thu Jul 31st, 2008 23:03 |
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Is the nasal spray Astelin a problem drug? It's an antihistamine.
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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Julia
Advocate (on leave)
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Posted: Thu Jul 31st, 2008 23:35 |
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Jim,
According to the Astelin website it doesn't contain steroids, so as far as I know it would be okay to use. If you do the MP you'll probably find your need for it diminish 
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Wed Sep 24th, 2008 04:11 |
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My physician (Dallas internist) has finally agreed to be actively involved in the MP. However, he said that he was unable to acess the physicans section of the websites.
What instructions can I give to him so he can access MP staff?
Thanks for your help!
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 212 |
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Posted: Wed Sep 24th, 2008 04:29 |
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| How to participate in the Private Section for Health Professionals
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Julia
Advocate (on leave)
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Posted: Wed Sep 24th, 2008 13:08 |
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Thanks, Josh, for the link. Jim, if you don't think your doc is going to remember to look up the link, or if he's not very computer-savvy, you could print out this section of it:
Health Professionals are welcome, and will be manually joined into the database after sending an email to Moderators@MarshallProtocol.com listing their desired username and password.
-Note: Screen names which contain a comma within the name are not technically compatible within our system. Note: You may wish to choose a username that allows you to remain anonymous.
-In your email, please include your name, and your professional details, your contact information including phone, email and office address.
We will respond to your request as quickly as possible. Please also feel free to call Dr. Marshall at 805-492-3693
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Sat Oct 25th, 2008 02:40 |
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Hi all,
I like to spend considerable time hiking in the woods. I periodically develop rashes and poison ivy like reactions. Each time it became bad enough that I went on prednisone – which always knocked it right out. Is there a solution for rashes on MP? Also, can I periodically use cortisone for small rashes?
A cover-up tip: Polartec (http://www.Psolar.com) makes a camo hunting mask that is elastic and completely covers the head, except a slit for the eyes, just enough for sun glasses. It is a little intimidating when you encounter strangers but it covers 100% and is perfect when in the wilds or golf course.
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Sat Oct 25th, 2008 02:53 |
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Hi again,
I'm still working to get my D25 down and my next test is in a week. At the peak of my sarcoids (8 years ago) I developed two bundle branch blocks. I have experienced one tachycardia. Needless to say, I'm mindful of going slow and being prepared for the worst. I hope to start MP next month.
Since higher D25 stops the immune response, it seems logical to skate along the edge of 20ng/ml and that a small dose of vit d could pull me out of a dangerous herx. I have been on benicar for high bp for 4 years and I understand the benicar solution to a bad herx. It seemed raising D25 would slow progress but remove the herx.
Thoughts?
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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Julia
Advocate (on leave)
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Posted: Sat Oct 25th, 2008 08:58 |
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Hi Jim,
Please keep all your questions together in your own thread for continuity.
See I've developed a rash. What should I do? (in the MP FAQs)
The topic Sarcoidosis says about rashes: Cutaneous manifestations of sarcoidosis are common and varied, and one patient can have different types of sarc skin lesions at the same time. Sarcoidosis is a systemic inflammatory disease, so be suspicious of sarcoidosis if you have a skin problem and you've already been diagnosed with sarcoidosis.
There really is no need to wear a mask and scare the wildlife  unless you turn out to be exceptionally light-sensitive, and your daylight outings are unavoidable. Just cover up well and use zinc oxide sunscreen on your face. The really essential thing is to wear NoIR glasses to keep the infra-red light out of your eyes.
You will not get well if you keep your 25-D high. Herx can be controlled by dose and timing of the MP medications. Removing the herx removes the healing.
Benicar for high BP is a totally different thing from Benicar at MP doses of 40mg every 6-8hrs. See Benicar FAQ.
Please make sure you know the following essential information thoroughly before you start the MP:
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. How to do a site search
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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Dr Trevor Marshall
Research Team
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Posted: Sat Oct 25th, 2008 10:21 |
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Jim, You really should be protecting your body with Benicar while you are weaning the Vitamin D. The cytokines will increase as the Vitamin D level drops, and usually Benicar is the best thing to block them. Have a chat with Doc about the need to protect your organs, especially your kidneys and heart, from unnecessary stress.
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Sat Oct 25th, 2008 15:28 |
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| Will do and thanks!
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Sat Oct 25th, 2008 15:37 |
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Julia,
Thanks for working so hard to help all of us. I especially appreciate the predictably quick response.
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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edj2001
Advocate
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 150 |
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Posted: Sat Oct 25th, 2008 16:54 |
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Hi Jim,
I notice you report a “right bundle branch block”. My EKG also indicates that but I never associated it with the sarcoidosis. I didn’t even know about sarc when it first showed up years ago. Thanks for the heads up.
Btw, looks like we are neighbors.
Gene
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Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
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JHGraves
Member
| Joined: | Fri Jul 25th, 2008 |
| Location: | Dallas, Texas USA |
| Posts: | 20 |
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Posted: Sat Oct 25th, 2008 18:54 |
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Gene,
Looks like you have been on MP for a long time. I hope you are getting solid results. Yes, I associated it with sarcoids but only because they happened at about the same time. It seemed logical since several other organs showed involvement in my scans.
What phase are you in and have you had any complications?
Jim
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JHGraves - sarcoids, D25-28, D125-42, right bundle branch block &left fascicle block, Reynauds.
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edj2001
Advocate
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 150 |
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Posted: Sat Oct 25th, 2008 19:36 |
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Hi Jim,
I found the MP late in 2005 and it made so much sense (how can you say having a healthy immune system isn’t good!) that I immediately started to look for a doc. I started benicar Dec 2005. The first IP (herx) symptoms were further confirmation that the MP was predictable.
Most of my symptoms have resolved or are improving. However, I still have the big three that I started with when diagnosed 10 years ago: productive cough, fatigue w/depression, & asthenia but they seem to be getting better and I look forward to a complete cure. Now that I understand this is infection, I realize that my symptoms started when I was very young so I am sure I have built up quite a bacterial population in the past years. Getting rid of them is a slow process due to limitations imposed by the IP effect.
I also went through a couple surgeries for malignant bladder tumors early 2007 and I credit the MP and support from Dr. Marshall and the nurse moderators for helping me to get that under control. Amy was kind enough to interview me on her web site: http://bacteriality.com/2008/07/18/interview24/
Check out her various articles and interviews if you haven’t been there yet.
Gene
Last edited on Sat Oct 25th, 2008 19:40 by edj2001
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Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
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