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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Thu Sep 18th, 2008 05:09 |
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Forgive me if I'm posting this in the wrong spot there is a lot to take in and learn on this wesite. However I was wondering if there would be anyone out there who I could buddy up with to help get my husband started on the MP kinda like a go to person for help. If so please let me know I wanna make sure we do everything right.
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Julia
Member
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Posted: Thu Sep 18th, 2008 15:23 |
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Hi Mindy,
I'm sorry, we don't have a buddy system, as it could lead to the situation where untrained members would be giving giving medical advice. I hope your husband is doing lots of research for himself - those who do their own reading (if possible) tend to do better on the MP.
Please note that 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 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... 
Julia 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Wed Sep 24th, 2008 03:15 |
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Hello,
I hope I'm writing this in the right place, I'm still learning the do's and don't but my husband is going to start the MP and I was wondering if I'm understanding right, first he needs to begin weaning off the pred and does he do that with Benicar all at the same time or does he wean off pred and then start Benicar? I thought I read somewhere you have to wait 2 weeks before starting Benicar, I have read so much I'm just worried I'm going to misunderstand the info.
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Julia
Member
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Posted: Wed Sep 24th, 2008 11:54 |
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The adrenal glands stop producing cortisol when someone takes a steroid like prednisone at high enough doses for a lengthy period. Reducing the steroid dose without counteracting the resulting rebound inflammation with a Benicar blockade could be dangerous and we do not recommend it.
Mindy, it's essential that you teach yourself to use the search facilities to find the information you need. If you click on the link I gave you to the FAQs Easy Finder & the ABC of MP (which you could add to your Favourites) and scroll down to S for Steroids, you'll find a wealth of information about how to wean
A suggestion: keep a notebook by the computer, and every time you find info that's relevant to your situation, make a note. Every time you find a webpage you'll need to refer to again, add it to Favourites.
A tip: those who read the info for themselves (if at all possible) and ask their own questions tend to be more successful on the MP. Could your husband take charge of his own recovery this way?
Come back to me here if you can't find what you need
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Wed Sep 24th, 2008 14:27 |
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Thanks for your response. I'm just trying to learn this as well along with my husband who is doing the reading. I just want to be sure I know how to help him with this so we can get him better. I used the search engine but didn't see what I was looking for so I thank you once again for providing the link it is now saved in my favorites. 
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 334 |
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Posted: Wed Sep 24th, 2008 22:05 |
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Hi Mindy
I learned that sometimes if there are no leads from the search function at the top of the page on http://www.curemyth1.org there can be quite a few from the same search word on http://www.marshallprotocol.com (however on the study site not all the references are available to newcomers)
I also kept a computer wordpad file copying the blue links from the top of the internet display onto the wordpad, then adding some reasons why I need to return there.
As I become more familiar with the main sites and with internet use, I downloaded Firefox (free) as I find the way I can organize favorites (there called bookmarks) suits me well
Go well . Sallie (I started this week)
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Thu Sep 25th, 2008 23:27 |
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Hi Julia,
We have a small battle here and I was wanting to know if you could tell me who is right? Here it goes, my husband went and seen a doctor who will work with him on using the MP treatment and said that Larry needed to be weaned 100% off pred. before starting Benicar BUT he (doctor) couldn't remember if he needed to be weaned 2 weeks before or not well reading on the website I told Larry he can start Benicar 1-2 weeks before weaning off pred. but Larry says we need to do what doctor says and I say he needs to do what the protocol says. So if you don't mind please help us sort this minor issue out. I'm so worried that we are going to make things worse if we don't understand everything we are both reading.
PS~ Larry read the part I should him about weaning off steriods the link you sent me to, but I think he's just nervous about all of this.
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Julia
Member
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Posted: Thu Sep 25th, 2008 23:37 |
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| Mindy, you need to show your doctor a printout of the weaning info, which explains how Benicar helps the weaning process. Highlight the bit I copied for you, about the dangers of reducing steroids without the protective effects of Benicar. After that it's up to your doc.
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Thu Sep 25th, 2008 23:54 |
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| Thank you Juila! I will do so at once.
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Mon Oct 27th, 2008 21:55 |
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Hello,
My husband will be finishing up the weaning process of Prednisone within a week, I have read and hope I understand that he must wait for 2 weeks before taking Mino, yes?? After the 2 week waiting period he will then take Mino every other day starting at 25mg only ramping up after IP is under control. That's where we are confused so once he is able to contol the IP he can ramp up to 50mg and then he will take it every 72 hours, yes??
Sorry for all questions I just want to make sure what we read is understood by us, my husband gets brain fogged so I try to help him out and with taking care of kids, house, daily errands and then helping my husband on the MP it gets crazy around here and I don't want to misunderstand what I read. If you can help me with simple answers or quick links which I have read all of them would be great.
Thanks for your kind understanding,
Mindy and Larry
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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edj2001
Moderator
| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
| Posts: | 221 |
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Posted: Mon Oct 27th, 2008 23:10 |
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Hi Mindy and Larry,
Mino is taken every 48 hours. However, it can be adjusted (duration and/or dose) as necessary to control IP.
Phase I is the time to experiment to determine the effect of the MP on the individual as everyone will be different. IP must be controlled to make sure it is tolerable if the individual is to be successful.
Intolerable IP adjustments can be made as necessary by increasing benicar, adjusting abx dose/frequency, along with strict avoidance of sun/florescence lighting. Review this with your doc.
Please read again the phase 1 guide line on how to get started:
phase 1 guidelines
Gene
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Sarcoidosis 1998| MP Dec 05| Gene's Story| Perspectives|
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Mon Oct 27th, 2008 23:20 |
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Thank you Gene! I'm going to read it again and again until it sinks in! If I have more questions I'll be back to ask!!
Thank you,
Mindy & Larry
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Tue Oct 28th, 2008 18:06 |
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Hi everyone,
This isn't about the weaning process but I was reading somewhere on a members thread about how if the dry cough with sarc. people isn't productive than it means the body isn't doing it's job with Benicar. I'm asking if we should be worried because my husband's chronic dry cough since being on Benicar has really gotten better or can we count that as being a bad thing? He use to get up in the middle of the night coughing but says he's not doing that anymore and we both have noticed during the day he doesn't cough at all really but when he goes to work and is moving about he still coughs. He thinks it's do to the non stop sinus drainage that makes him cough, he still coughs but just not as much as he use to.
Other than that he's just fatigue, dizzy and has a BP of 104/58, which I know the BP can change on Benicar and should get better. Anyway if anyone could shine some light on the above question that would be great! I hope it's ok...
I didn't know if I should keep this question attached to this thread or start another one.
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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patrickburke
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| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 30 |
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Posted: Tue Oct 28th, 2008 21:29 |
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Hi Mindy,
It is good that your husbands failed immune response (the dry cough) has halted .
I hope that he is enjoying the relief. In time he should progress further to the real productive cough (immune response) that will mean that he is killing the bugs that are causing his sarc. Then later he will have no cough at all like me .
Keep up the good work.
I used to have the "post nasal drip" it was one of the first things to vanish after I gave up eating vitamin D.
The dizziness and fatigue are also excellent signs that his immune system is working again (IP). Just imagine that he had the flu and that his body was fighting it how would he feel then? Sarc is far worse than the flu.
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Wed Oct 29th, 2008 00:00 |
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Thanks Pat for getting back to me, I'm glad we don't have to worry. I have a few questons I'd like to ask you if you don't mind.
1) How far into the MP process did you see changes in your imaging?
2) Has your post nasal drip returned any?
3) When you get your blood tested does your ACE levels come back within normal range to?
I just touched base with Larry & I asked him when he coughs if it was productive and he said yes, so there was a misunderstanding on my end. I may not have heard him as he talks so darn soft!! So to recap his coughing is better and it is productive so that's still good... Sorry for the mistake...
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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patrickburke
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Posted: Wed Oct 29th, 2008 19:36 |
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Hi Mindy,
My x rays cleared very quickly, after only a few months. But note that I had been avoiding D for several months and had pulsed mino for 6 months also prior to starting the MP so maybe that gave me a little bit of a head start. Also although my adenopathy had gone there was still some slight shadowing left which "could have been anything" according to my pulmo back then. My xrays are now "perfect" after 3 1/2 years on the MP. Whats more my lungs actually "feel" perfect .
The post nasal drip vanished within weeks of giving up D and has never returned .
Have a look at http://http://www.marshallprotocol.com/view_topic.php?id=7287&forum_id=2&jump_to=114924#p114924] and scroll down to my success story to see what my test results were last month .
Tell Larry to fight these bugs like an angry lion  they deserve no mercy whatsoever.
Hope that all helps.
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Wed Oct 29th, 2008 21:48 |
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Hi Pat,
I enjoyed reading your story and wish you the best of health! While I was reading along I noticed that Larry has some common things like spelling, the other day he was typing and just kept messing up on words. He said he felt like he had dyslexia and then with his speech he gets tongue tied but not always do these things happen and memory I kid you not he don't believe me but there are days when he will forget I told him something or where he put something. I never really thought it was sarc I just thought it was that nasty drug prednisone making him that way. What a fool I'am!!
Ok, now as far as scarring, did you not have any scarring in the lungs or if you did do you think being on the MP helped? Larry has scarring and from what I understand that will always remain. I'm just confused as to if yours went away on MP or you never had any scarring.
Lastly regarding the eGFR you mentioned should Larry get tested for this or did you have problems already with your kidney's before MP or was that something the sarc did?
Thanks for answering my questions,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Posted: Thu Oct 30th, 2008 03:11 |
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Mindy,
This info says that fibrotic tissue ("scarring") in the lungs has been seen to resolve on the MP, but it takes quite a while to do so: Fibrosis
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Thu Oct 30th, 2008 04:10 |
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Josh,
Thank you so much for that wonderful info! See we were told by his doctor that Sarc will go away (NOT) but there will always be scarring. The MP is so amazing and I can't wait until we see all the wonders it has to offer. I understand 100% that it will take time but HE WILL BEAT SARC!!!
Thanks again,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Wed Nov 5th, 2008 22:40 |
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Hi,
My husband was 15-30 minutes late in taking his Benicar and I was wondering if we should follow the recommandations I found on the link or is that such a samll amount of time he will be ok? I have stressed to him that it's important to take it right on the dot or am I being a little over the top?
Thank you,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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