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captbubba
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| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Thu May 15th, 2008 20:02 |
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Hello all,
My name is Jan, and I have Sarcoidosis, dx about 5yrs ago. Fought going on steroids up to about 1 1/2 yrs ago. Now on Pred 2.5 mg daily and Methotrexate. have kidney disease, probably a complication of sarc and nsaids for a bad back. Anyway, would like to try te MP and would like a physician reference for the Cleveland area. Thanks for your help.
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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Julia
Advocate (on leave)
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Posted: Thu May 15th, 2008 22:15 |
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Hi Jan, and welcome!
The doctor list is under revision at the moment. The MP clinical trial has just been closed temporarily to new members.
But that doesn't stop you reading up all you can about the MP in order to discuss it knowledgeably with your doctors, who should be encouraged to join the Health Professionals Forum. Here are some links to have a look at, in case you haven't found them yet:
Sarcoidosis Facts
"What is the Marshall Protocol?"
Simple Explanations
Safety Warnings
Diagnostic test for the MP: D-metabolites tests
Success Stories
Bacteriality - a blog by one of our members
Please ask any further questions here at your own personal thread
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu May 15th, 2008 22:15 |
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Jan,
Welcome to the site to ask questions about the Marshall Pathogenesis and Protocol. I'm glad you came.
Please remember to take the opportunity to read topics posted by others on the study site as part of the required reading.
Julia's links are excellent. Please read them.
I also recommend you frequently read Amy Proal's http://www.Bacteriality.com site. A good place to start is her recent presentation in vimeo (movie) format. Here is Amy's description and the link:
In the following video, I explain the science that forms the backbone of the Marshall Protocol in simple terms. I discuss the bacteria implicated in causing chronic inflammatory disease, and explain how these pathogens affect the immune system. I also describe the basics of the treatment itself, providing information that any patient who plans to start the Marshall Protocol, or any doctor planning to put a patient on the MP, should understand. My narration is accompanied by slides with pictures and images of the pathogens and molecules I discuss. The video is 89 minutes.
http://bacteriality.com/2008/05/07/mpintro/
Best to you Jan--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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captbubba
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Thu Jun 12th, 2008 01:17 |
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Weaning from meds, picking a MD...
Been almost 2 weeks off the pred and MTX. Also the folate supplement that my Pulmonologist tried for my tiredness. What I'm deciding now is to go with my primary, (who is in preventative medicine, so he is not affiliated w any hospital) or the pulmonologist who has treated me so far.
Pulmonologist: Never ran the protocol but is willing to try. His colleague Dr B (Drs name removed) at Un of Cincinati said I have nothing to lose by trying since I'm "chronic". The positive here is that that the pul md is "on the books" w Cleveland clinic, insurance etc, so if things go bad I have a connection.
Primary: Has run the protocol on 2 pts with encouraging results. I'd be his 3rd. Also is managing my "complication" of being perimenopausal!! He also uses jin syn jitsu energy massage which helps everything flow along. Tends to vitamins and such before using meds, but the Marshall seems to be the exception. Has access to homeopathy,SENPRO and acupuncture etc (What we like to call our voodoo medicine!)
Or do I keep them both in the loop? I already get monthly blood draws for the pul md. Also have kidney specialist becauce kidney stones I didnt know I had (!) caused me to lose about 50% of function. His biggest problem is that the dose of Benicar will deck me, since its only 110/70 normally.
Comments or suggestions welcome. Especially from anybody w kidney involvement or lower BP about benicar dose.
Jan P.
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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natalie17
Advocate
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Posted: Thu Jun 12th, 2008 03:03 |
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Hi Jan,
Persoanlly, my BP was a lot lower than that going into the MP (circa 90/60) and I am, and have been, fine. Suggest you read-
My blood pressure is already low. Can I take Benicar?
Also personally, I have my supportive MP Dr., but I then have 3 other health professionals that are being kept in the loop... they're learning through my experience.
Also take a look at Massage & Physical therapy before taking on any of it while on the MP.
Only you can make the decision about which Dr. you go with.
Good luck,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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captbubba
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Thu Jun 12th, 2008 14:58 |
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Thanks. The massage info was very relevant. Found more threads from your suggestions about Benicar, blood pressure and kidney function. This will help my pul MD.
btw am going w the pul MD as primary because, although he's never done the MP, he is familiar with running test protocols and REFUSES to do it without talking to Dr. Marshall! He wants my case to be part of the studies, good or bad.
My other MD has been treating without doing so, just going by the info pts provide him.
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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captbubba
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Tue Jun 17th, 2008 18:43 |
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Just wanted to make sure I'm posting whats needed on the sig line. I am now registered to the Professionals site. Do I need to keep a log on this site and the professional once I get started? Currently getting info for my MD, and he is researching his end, including contacting Dr. Marshall.
Thanks
JanP.
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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Julia
Advocate (on leave)
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Posted: Tue Jun 17th, 2008 21:43 |
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Jan,
A signature line is not essential on this site. You do need it for your progress report on the main site if you've been accepted as a member of the MP study group. How to add the required signature line. Note you need to mention any non-MP medications you take regularly.
Just before you start Benicar, you should start a Progress Report (called 'Jan P on Benicar' or 'Captbubba on Benicar') in the Benicar Only Forum or the Professionals Forum. All your medical and lifestyle questions should then be asked there when you post your weekly report (or more often if you're having any trouble).
You are still welcome to post here occasionally, if you have non-medical questions such as "how do folks cope with colleagues who don't understand?" or "did anyone else have this symptom?" or just to get a bit of sympathy when the going gets tough. And we're good at finding the information you're looking for in the labyrinth of the main site!
Please keep all your questions here in your own personal thread. If you can't see it, click on 'MyAccount' at the top of the page.
Congratulations on weaning off the prednisone. All the best for getting your doctor on board.
Suggestions To Get Your Doctor On Board With the MP
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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captbubba
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Wed Jun 18th, 2008 13:52 |
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Thanks for your response! in that vein, I need help.
Because of my kidney involvement (I had elevated calcium, which led to kidney stones, which led to one of them blocking my ureter, which caused me to lose 50% function) my doctor is thoroughly convinced if I start the benicar at 40mg, I will IMMEDIATELY need dialysis. He has even suggested I be in the hospital when I take the 40mg so they can "intervene" when I crash!
The concern is the vascular system in the kidney. I have asked for a better description of my kidney condition ( The only thing I was told so far is CKD, which I searched with). I have recommended he get on the professional site as I have found some answers (like the benefits of high dose bene for kidney problems) and to call Dr Marshall so he can ask his questions. Frankly, between poor memory and flitting from one interesting place to another on this site. I am losing track of it. I have given him some of the Benicar info I've found and remembered to print!
I think talking to an MD who has treated pts with kidney problems caused by sarcoidosis with the MP would be of immense help. How can I find that kind of info?
Many thanks again!
jan
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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Julia
Advocate (on leave)
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Posted: Wed Jun 18th, 2008 16:09 |
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Jan,
Here are links to all the Benicar safety info:
FDA safety insert
Benicar-Basic Information - includes links to kidney safety studies
Benicar Applications Beyond Hypertension
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
My kidney function tests are worse since I started the MP. What should I do?
Here are links to independent studies on ARBs and the kidneys:
ARBs treat chronic kidney disease
Scientific studies demonstrating Benicar is renoprotective
Effects of ARBs (as a class of drugs) on kidney function
Effects of Higher-Dose Angiotensin Receptor Blockers On Humans
To discuss further with other docs who have had patients with CKD, your doctor must join the Health Professionals Forum.
Hope this helps.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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captbubba
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Sat Jun 28th, 2008 01:53 |
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Hi Julia,
I have also gained access to the Professional boards (retired paramedic). What topic would I post in to talk to another physician? I am stuck at this point.
Also found a "ramp" modified benicar protocol on the site (getting to full dose in 3 days). Where can I find more details on this?
I am sick of being sick, especially for no reason. Would much rather be getting sick on the herx because at least there is a good outcome for my trouble. But the kidney thing is in the way.
Thanks!
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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Julia
Advocate (on leave)
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Posted: Sat Jun 28th, 2008 20:46 |
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Jan,
I have no access to the professionals' forum, so I can't answer your question about that. To do the MP safely, you really need to have a prescribing doctor who's prepared to join the site and find out more.
Information about ramping Benicar is found in Why shouldn't we ramp up the dose of Benicar? Please heed the warnings in that link.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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captbubba
Member
| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Thu Jul 17th, 2008 14:34 |
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somewhere on the site I found a one page "MP cheat sheet" and cant find it again, need another copy. help anyone?? not sure if it was here or one the Professional site.
Thanks
jan
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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cathys2007
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| Joined: | Tue Jun 17th, 2008 |
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Posted: Thu Jul 17th, 2008 15:13 |
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Jan,
Is this quick reference guide what you are looking for?
1st laminated quick reference:
Front=Phase 1 / Back=Medical Interactions (see below)
The Phase 1 Quick Reference is the auxillary companion sheet for the complete official Marshall Protocol Phase 1 document. Bright yellow gold sections have helpful blood test suggestions for D metabolites and other tests. First MP medications listed as well. Caution: this is just a quick overview and reminder, please read and understand the full Marshall Protocol Phase 1 document and follow all aspects of the MP for safe and successful treatment. PDF download 36kb, requires Acrobat Reader.
...............................
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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captbubba
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| Joined: | Thu May 15th, 2008 |
| Location: | Lakewood, Ohio USA |
| Posts: | 9 |
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Posted: Mon Jul 21st, 2008 00:12 |
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Thanks thats it!
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Jan P. DX 2003 sarcoid -lung,eye,lymph,skin,salivaries,etc.
D125 120's/d never above 20, 2005. St pred /mtx 3/2007. 5/08 D125 50's D 15's, ACE 129 w pred.
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