Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Sharon, This is a very good group, we have a great " Sarcoid " family here with a lot of knowledge, as far as the Marshal protocol goes, it is not a proven theory, I even tried it when I was first dx many years ago, it did nothing for me. You will find a great wealth of information here. Welcome and I hope we can be helpful, Marla These sarcoid waters seem to be very murky with more theories than definitive answers and many different approaches by many different specialists. I've only known about my NS since Oct '07 and haven't found any single good source of information. This group has been more helpful than anything that I've come across so far. Thank you, thank you, thank you!!! I hope you don't mind a couple of questions (I'm sure I'll have more in the future) Do any of you have experience with the MP protocol? What do your doctors think about it? Sounds almost too good to be true and you know what they say about that. Any suggestions for newbies to NS as far as ferreting out accurate information? Thanks again, Sharon -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi, According to the Marshal Protocol the reduction of vitamin D plays a very important part in reducing sarcoidosis flair-ups and suggests avoiding sunlight. My own personal experience is just the opposite. After spending hours in the sun I feel my best. Many web links to MP are related to pulmonary sarc not neuro sarc. I don't think there is one solution to the mess most of us are in, we each have our own unique battle to fight. best regards, RickMarla Bramer wrote: Hi Sharon, This is a very good group, we have a great "Sarcoid" family here with a lot of knowledge, as far as the Marshal protocol goes, it is not a proven theory, I even tried it when I was first dx many years ago, it did nothing for me. You will find a great wealth of information here. Welcome and I hope we can be helpful, Marla These sarcoid waters seem to be very murky with more theories than definitive answers and many different approaches by many different specialists. I've only known about my NS since Oct '07 and haven't found any single good source of information. This group has been more helpful than anything that I've come across so far. Thank you, thank you, thank you!!!I hope you don't mind a couple of questions (I'm sure I'll have more in the future)Do any of you have experience with the MP protocol? What do your doctors think about it? Sounds almost too good to be true and you know what they say about that.Any suggestions for newbies to NS as far as ferreting out accurate information?Thanks again,Sharon-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Do any of you have experience with the MP protocol? What do your doctors think about it? Sounds almost too good to be true and you know what they say about that.Any suggestions for newbies to NS as far as ferreting out accurate information? Sharon, I'm glad you found us. Our membership has more than 500 members with NS. Many of us have had sarcoidosis for decades-- and the systemic and neuro-effects for many years. As far as MP-- all of us have been emailed privately by the MP people-- they know they aren't allowed to do that-- but will still contact you. If they become annoying-- send a note to YAHOOGROUPS that you are being spammed by them. I hate to sound so aggressive against their program-- but we have numerous members that have been on the protocol-- and came searching for other answers because of the problems they encountered. Personally, I found that when I went to their site, and asked questions, I was rebuked-- because they don't have the answers. They want you to follow their protocol without question. The concept is to expect side effects, and just deal with them. They will tell you that Trevor Marshall has been nominated for the Noble Prize. Anyone can be nominated-- and his "people" nominated him. In reading their papers, they will tell you they have the cure for most auto-immune diseases. If that was truly the case-- we'd all be beating the door down. If you were to do an indepth search of Trevor Marshall, and follow it into his history and employment background in Australia-- you'd find that he has been CEO, CFO- (the equivalent of by US standards) and that he has been run out of Australia for different fraud and embezzlement issues. Several of his corporations have bankrupted, and so he goes from country to country to get his "grants" to keep his programs going. This is not the person I want telling me he has the cure. This information is on the internet-- and although I will not provide it here-- it's not what we are about-- we are a support group helping each other get as good a quality of life as we can-- I do suggest that you research his background. One thing about the US medical system-- (even with all it's problems) is that our docs are Board Certified, Licensed in Medicine etc. FSR--- a wonderful site that has several of the TOP MD's in sarcoidosis on their board of directors, does not support this protocol. It has not gone through the clinical trials that we have in place here. It is also part of the reason that they are so aggressive in getting their info to you-- if they can "sign on" more people, then maybe they can get to the next level of Clinical Trial. In the US, a Level 1 Clinical trial is 20 or 30 people. Level 2- which was what I was part of for Remicade-- is only 125 people worldwide. Level 3 Clinical Trials would mean between 800-1000 people- and we can't even get that together for many of meds-- so we proceed "off label." This isn't a perfect system here in the states, but at least when you ask questions-- you get answers and aren't shunned because you asked. When anyone says anything derogative about their protocol-- or even mentions the Australia history-- they are threatened by TM to have their site shut down, or that TM will sue and this goes on. So we all hate to even discuss their programs on our sites. If you want to learn about their program-- go to their site to ask questons-- we honestly don't have the answers. We can only tell you that the people that are here are here because the program there did not work for them. We all want to help each other-- and we do so here by sharing information that we have found credible within our relationships to our MD's. Many of our members are patients of the U.S. top 2 MD's in the Sarcoidosis field-- Dr. Om Sharma at USC-LA, and Dr. Baughman back east - and honestly, when I research any questions that come up-- I do look for articles that site or have connections with the MD's that have registered through these facilities. FSR (Foundation for Sarcoidosis) www.stopsarcoidosis.org Research does have a very good listing of sarcoidosis specialists, and articles. We also have a fantastic LINKS and ARCHIVES section that have many articles that you can print out and take to your MD's. You will be educating them-- they will probably have only one or two sarc patients in their practice-- and if they have more-- they'll only have 1 that will have progressive multisystem sarcoidosis. i don't know if I answered your question-- but if i was looking for credible information-- I'd be looking for articles that are written by the Specialists who have registered on FSR. I'd search for Sarcoidosis Clinics-- and call the practices-- ask questions-- and ask here- many of us have spent enough time with our MD"s to feel that they do have an interest in helping us-- and we'll share what we know. Both our successes and failures. Take care, Tracie NS Co-owner/moderator Who's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Rick you are so right, as any sunlight exposure for me makes me sick, if I am out in it very long, then I will get flu like symptoms. So like you said we all experience things differently. Marla Hi, According to the Marshal Protocol the reduction of vitamin D plays a very important part in reducing sarcoidosis flair-ups and suggests avoiding sunlight. My own personal experience is just the opposite. After spending hours in the sun I feel my best. Many web links to MP are related to pulmonary sarc not neuro sarc. I don't think there is one solution to the mess most of us are in, we each have our own unique battle to fight. best regards, RickMarla Bramer wrote: Hi Sharon, This is a very good group, we have a great " Sarcoid " family here with a lot of knowledge, as far as the Marshal protocol goes, it is not a proven theory, I even tried it when I was first dx many years ago, it did nothing for me. You will find a great wealth of information here. Welcome and I hope we can be helpful, Marla These sarcoid waters seem to be very murky with more theories than definitive answers and many different approaches by many different specialists. I've only known about my NS since Oct '07 and haven't found any single good source of information. This group has been more helpful than anything that I've come across so far. Thank you, thank you, thank you!!!I hope you don't mind a couple of questions (I'm sure I'll have more in the future)Do any of you have experience with the MP protocol? What do your doctors think about it? Sounds almost too good to be true and you know what they say about that.Any suggestions for newbies to NS as far as ferreting out accurate information?Thanks again,Sharon-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 I am just now reading this, but as to the marshall protocol, what sounds too good to be true usually is. There has been foundation for the claims they make as far as I know, and trust me if there was validity to this protocol, this group would know about it. Before I found this tremendous group of friends I found the Marshall group, it was a nightmare. Nuff said.....Connie --- birthn905 wrote: > These sarcoid waters seem to be very murky with more > theories than > definitive answers and many different approaches by > many different > specialists. I've only known about my NS since Oct > '07 and haven't > found any single good source of information. This > group has been more > helpful than anything that I've come across so far. > Thank you, thank > you, thank you!!! > > I hope you don't mind a couple of questions (I'm > sure I'll have more in > the future) > > Do any of you have experience with the MP protocol? > What do your > doctors think about it? Sounds almost too good to be > true and you know > what they say about that. > > Any suggestions for newbies to NS as far as > ferreting out accurate > information? > > Thanks again, > Sharon > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 I am just now reading this, but as to the marshall protocol, what sounds too good to be true usually is. There has been foundation for the claims they make as far as I know, and trust me if there was validity to this protocol, this group would know about it. Before I found this tremendous group of friends I found the Marshall group, it was a nightmare. Nuff said.....Connie --- birthn905 wrote: > These sarcoid waters seem to be very murky with more > theories than > definitive answers and many different approaches by > many different > specialists. I've only known about my NS since Oct > '07 and haven't > found any single good source of information. This > group has been more > helpful than anything that I've come across so far. > Thank you, thank > you, thank you!!! > > I hope you don't mind a couple of questions (I'm > sure I'll have more in > the future) > > Do any of you have experience with the MP protocol? > What do your > doctors think about it? Sounds almost too good to be > true and you know > what they say about that. > > Any suggestions for newbies to NS as far as > ferreting out accurate > information? > > Thanks again, > Sharon > > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 If I get out in the sun for very long at all my body just shuts down, I get so sick I have to lay down. Fight as hard as I can it tears me up. Connie --- Marla Bramer wrote: > Rick you are so right, as any sunlight exposure for > me makes me sick, if I > am out in it very long, then I will get flu like > symptoms. So like you said > we all experience things differently. Marla > > On Feb 9, 2008 10:39 PM, Rick Jack > wrote: > > > Hi, > > According to the Marshal Protocol the reduction > of vitamin D plays a > > very important part in reducing sarcoidosis > flair-ups and suggests avoiding > > sunlight. My own personal experience is just the > opposite. After spending > > hours in the sun I feel my best. > > Many web links to MP are related to pulmonary sarc > not neuro sarc. I don't > > think there is one solution to the mess most of us > are in, we each have our > > own unique battle to fight. > > best regards, > > Rick > > > > *Marla Bramer * wrote: > > > > Hi Sharon, > > This is a very good group, we have a great > " Sarcoid " family here with a > > lot of knowledge, as far as the Marshal protocol > goes, it is not a proven > > theory, I even tried it when I was first dx many > years ago, it did nothing > > for me. > > You will find a great wealth of information here. > > Welcome and I hope we can be helpful, Marla > > > > On Feb 9, 2008 3:04 AM, birthn905 > wrote: > > > > > These sarcoid waters seem to be very murky > with more theories than > > > definitive answers and many different approaches > by many different > > > specialists. I've only known about my NS since > Oct '07 and haven't > > > found any single good source of information. > This group has been more > > > helpful than anything that I've come across so > far. Thank you, thank > > > you, thank you!!! > > > > > > I hope you don't mind a couple of questions (I'm > sure I'll have more in > > > the future) > > > > > > Do any of you have experience with the MP > protocol? What do your > > > doctors think about it? Sounds almost too good > to be true and you know > > > what they say about that. > > > > > > Any suggestions for newbies to NS as far as > ferreting out accurate > > > information? > > > > > > Thanks again, > > > Sharon > > > > > > > > > > > > -- > > Marla Bramer > > Independent Beauty Consultant > > Kay > > > > mbramer@... > > www.marykay.com/mbramer > > > > > > ------------------------------ > > Be a better friend, newshound, and know-it-all > with Yahoo! Mobile. Try it > > > now.<http://us.rd.yahoo.com/evt=51733/*http://mobile.yahoo.com/;_ylt=Ahu06i62sR8\ HDtDypao8Wcj9tAcJ> > > > > > > > > -- > Marla Bramer > Independent Beauty Consultant > Kay > > mbramer@... > www.marykay.com/mbramer > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 If I get out in the sun for very long at all my body just shuts down, I get so sick I have to lay down. Fight as hard as I can it tears me up. Connie --- Marla Bramer wrote: > Rick you are so right, as any sunlight exposure for > me makes me sick, if I > am out in it very long, then I will get flu like > symptoms. So like you said > we all experience things differently. Marla > > On Feb 9, 2008 10:39 PM, Rick Jack > wrote: > > > Hi, > > According to the Marshal Protocol the reduction > of vitamin D plays a > > very important part in reducing sarcoidosis > flair-ups and suggests avoiding > > sunlight. My own personal experience is just the > opposite. After spending > > hours in the sun I feel my best. > > Many web links to MP are related to pulmonary sarc > not neuro sarc. I don't > > think there is one solution to the mess most of us > are in, we each have our > > own unique battle to fight. > > best regards, > > Rick > > > > *Marla Bramer * wrote: > > > > Hi Sharon, > > This is a very good group, we have a great > " Sarcoid " family here with a > > lot of knowledge, as far as the Marshal protocol > goes, it is not a proven > > theory, I even tried it when I was first dx many > years ago, it did nothing > > for me. > > You will find a great wealth of information here. > > Welcome and I hope we can be helpful, Marla > > > > On Feb 9, 2008 3:04 AM, birthn905 > wrote: > > > > > These sarcoid waters seem to be very murky > with more theories than > > > definitive answers and many different approaches > by many different > > > specialists. I've only known about my NS since > Oct '07 and haven't > > > found any single good source of information. > This group has been more > > > helpful than anything that I've come across so > far. Thank you, thank > > > you, thank you!!! > > > > > > I hope you don't mind a couple of questions (I'm > sure I'll have more in > > > the future) > > > > > > Do any of you have experience with the MP > protocol? What do your > > > doctors think about it? Sounds almost too good > to be true and you know > > > what they say about that. > > > > > > Any suggestions for newbies to NS as far as > ferreting out accurate > > > information? > > > > > > Thanks again, > > > Sharon > > > > > > > > > > > > -- > > Marla Bramer > > Independent Beauty Consultant > > Kay > > > > mbramer@... > > www.marykay.com/mbramer > > > > > > ------------------------------ > > Be a better friend, newshound, and know-it-all > with Yahoo! Mobile. Try it > > > now.<http://us.rd.yahoo.com/evt=51733/*http://mobile.yahoo.com/;_ylt=Ahu06i62sR8\ HDtDypao8Wcj9tAcJ> > > > > > > > > -- > Marla Bramer > Independent Beauty Consultant > Kay > > mbramer@... > www.marykay.com/mbramer > ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2008 Report Share Posted May 29, 2008 Hi Doug, Yes, we've heard of the protocol. They promise a cure-- and believe me, if it worked we'd all be on it. Several of our members have gone this route, and have ended up right here searching like the rest of us. So far, no one knows why or how we contracted sarcoidosis. It is autoimmune, meaning that something turned on our immune systems, and now it won't turn off. The scientists have found that we produce too much of a protein --TNF-a and TNF-b. Whether it is genetics-- or genetics as a predisposition to autoimmune diseases, (which include MS, Lupus, Diabetes, Rheumatioid Arthritis, and more) and probably exposure to a rouge virus similar to TB-- as well as to agricultural dust, pesticides, or just dumb luck-- we ended up with an off-balance immune system. Methotrexate takes some time to help-- and it is usually about 3 months before you see real results. His docs might be ok to add another immuno suppressant, Imuran, Arava or Plaquenil and give those time to work. All of them take time-- but will give him some relief from the systemic inflammation that make his whole body ache. It is a trial and error process, and you have to go up the chain of meds to get the right combination to slow the progression-- but it can and does happen! Sarcoidosis so far has no cure-- and this is not like having the flu-- it's here to stay-- so what has to happen is that his immune system needs to be suppressed so that it stops attacking healthy tissue. www.sarcoidosissharma is a great site, and Dr. Sharma is one of the best MD's in the world treating this disease. You can go to www.arthritis.org and look at past editions--2007 Drug Supplement guide is great for listing the different drugs, DMARDS, Disease Modifying AntiRheumatic Drugs, Biologicals--BRM's and pain meds, etc. These are the ones they use on us-- and they give you some great info. As far as the MP-- I'd read up on it-- and research Marshall-- he's more scary and claims to have the cure for all the autoimmune diseases, and yes, his staff have nominated him for he Nobel Prize-- but I can nominate you-- and he's got a serious history of fraud in several countries-- so really be careful. Sincerely, Tracie NS Co-owner/moderator Marshall Protocol Has anyone heard of the Marshall Protocol? It looks very hopeful and I am interested in helping me father get this treatment. He is NOT responding to Methotrexate and is getting worse. Any thoughts? thanks doug jackson ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- FAITH CHAT:  SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.sarcbuddies.com/chat   Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2008 Report Share Posted May 29, 2008 thanks marla---he has been on Methotrexate for 5 weeks....Marla Bramer wrote: Been there tried it, no help, I know we are always willing to try something we think might help, but this is one I would say is not worth wasting your time on. How long has your Father been on Methotrexate, and is he on any other drugs too? Many times it takes more then one drug to get relief? Marla On Thu, May 29, 2008 at 9:32 AM, dougjacksonguitar <dougjacksonguitar (AT) yahoo (DOT) com> wrote: Has anyone heard of the Marshall Protocol? It looks very hopeful and I am interested in helping me father get this treatment. He is NOT responding to Methotrexate and is getting worse. Any thoughts? thanks doug jackson-- Marla Bramer Independent Beauty Consultant Kaymbramer (AT) marykay (DOT) com www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope DJ MySpace http://www.myspace.com/dougjacksonguitar1DJ Ambrosia Interview http://www.ambrosiaweb.com/accessdj.htm Quote Link to comment Share on other sites More sharing options...
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