Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Does anyone know if LDN would help with a case of sarcoidosis? Thanks in hope Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Sarcoidosis is NOT a form of cancer. It is an autoimmune disease according to some doctors. Others are not quiet sure if it is an autoimmune disease. So who knows? Doctors seem not to know much about it and every single pulmo MD I have seen has given me different information. So I have found I need to READ and keep up on stuff and search for my own " cure " . Thus far, this seems to do well with many people and seems safer than other options. Larry, I wish i could find SOMEONE on here that does take it for sarcoidosis, but I am still waiting for someone to answer. I too have sarcoidosis. There seems to be MANY people with MS it has been effective for, but no first hand sarcoidosis accounts...besides being referred to the LDN website and the fact that it is listed there. So your guess is as good as mine. I think I will throw caution in the wind and many be make an appointment and see for myself if it works for my sarcoid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 If you have Sarcoidosis, you should contact the MP[Marshall Protocol .com] Marshall had Sarc. and the treatment he developed was specifically for Sarc, originally. It cured Trevor marshall, and many others. You can not mess around with Sarc. The LDN, will help, of course, but you need to kill the pathogens. Sarcoidosis is NOT a form of cancer. It is an autoimmune disease according to some doctors. Others are not quiet sure if it is an autoimmune disease. So who knows? Doctors seem not to know much about it and every single pulmo MD I have seen has given me different information. So I have found I need to READ and keep up on stuff and search for my own "cure". Thus far, this seems to do well with many people and seems safer than other options. Larry, I wish i could find SOMEONE on here that does take it for sarcoidosis, but I am still waiting for someone to answer. I too have sarcoidosis. There seems to be MANY people with MS it has been effective for, but no first hand sarcoidosis accounts...besides being referred to the LDN website and the fact that it is listed there. So your guess is as good as mine. I think I will throw caution in the wind and many be make an appointment and see for myself if it works for my sarcoid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Pilattes, the stretching exercises, have completely relieved my husband's sarcoidosis pain and symptoms. He went once week at first until he could do the exercises by himself, now he goes once a month for a refresher. Pilattes retrains the muscles so they help the condition instead of hurt it. > > Sarcoidosis is NOT a form of cancer. It is an autoimmune disease according to some doctors. > Others are not quiet sure if it is an autoimmune disease. So who knows? Doctors seem not to > know much about it and every single pulmo MD I have seen has given me different > information. So I have found I need to READ and keep up on stuff and search for my own > " cure " . Thus far, this seems to do well with many people and seems safer than other options. > > Larry, I wish i could find SOMEONE on here that does take it for sarcoidosis, but I am still > waiting for someone to answer. I too have sarcoidosis. There seems to be MANY people with > MS it has been effective for, but no first hand sarcoidosis accounts...besides being referred to > the LDN website and the fact that it is listed there. So your guess is as good as mine. I think I > will throw caution in the wind and many be make an appointment and see for myself if it > works for my sarcoid. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 By the way ~ you will need private pilates lessons so that you can tell the instructor exactly what your problem is. His cost was $40. per session....well worth it! > > > > Sarcoidosis is NOT a form of cancer. It is an autoimmune disease > according to some doctors. > > Others are not quiet sure if it is an autoimmune disease. So who > knows? Doctors seem not to > > know much about it and every single pulmo MD I have seen has given > me different > > information. So I have found I need to READ and keep up on stuff > and search for my own > > " cure " . Thus far, this seems to do well with many people and seems > safer than other options. > > > > Larry, I wish i could find SOMEONE on here that does take it for > sarcoidosis, but I am still > > waiting for someone to answer. I too have sarcoidosis. There seems > to be MANY people with > > MS it has been effective for, but no first hand sarcoidosis > accounts...besides being referred to > > the LDN website and the fact that it is listed there. So your > guess is as good as mine. I think I > > will throw caution in the wind and many be make an appointment and > see for myself if it > > works for my sarcoid. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 My cousin has sarcoidosis and our family is loaded with auto immune. I am really running like crazy until next week, but if someone wants to contact me next week I can tell you what she is doing about it, and what we are doing about ms, scleroderma, and sjrogren’s and fibromyalgia. Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 I have read about his protocol and am not sure if I personally feel comfortable with doing it. Using the ABR at a high dose with an ABX can cause crisis and land one in their local ER with NO back up. (an internet site cannot help the ER docs) LDN seems to work with your body so it can perform its own clean up by stimulating the immune system to work properly and effectively. Personally I would be willing to do the ABX, but not mixed with the ABRs without solid clinical trials as that is out of my comfort level. Dr, Bihari is a real MD, has patients that have used LDN with successful results and the side effects of this treatment are low. I have not heard of anyone being rushed into the ER because of a LDN episode. Just my opinion from what I have read. -- In low dose naltrexone , " Ron Ball " <rball@...> wrote: > > > > If you have Sarcoidosis, you should contact the MP[Marshall Protocol .com] Marshall had Sarc. and the treatment he developed was specifically for Sarc, originally. It cured Trevor marshall, and many others. You can not mess around with Sarc. The LDN, will help, of course, but you need to kill the pathogens. > > > > > > > > Sarcoidosis is NOT a form of cancer. It is an autoimmune disease according to some doctors. > Others are not quiet sure if it is an autoimmune disease. So who knows? Doctors seem not to > know much about it and every single pulmo MD I have seen has given me different > information. So I have found I need to READ and keep up on stuff and search for my own > " cure " . Thus far, this seems to do well with many people and seems safer than other options. > > Larry, I wish i could find SOMEONE on here that does take it for sarcoidosis, but I am still > waiting for someone to answer. I too have sarcoidosis. There seems to be MANY people with > MS it has been effective for, but no first hand sarcoidosis accounts...besides being referred to > the LDN website and the fact that it is listed there. So your guess is as good as mine. I think I > will throw caution in the wind and many be make an appointment and see for myself if it > works for my sarcoid. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Liz, We all have to do what we feel comfortable with. The problem is that people will almost all die from Sarc so waiting too long may not be the best option. LDN is a palliative option that is much better than the usual prednisone or other immuno-suppressants that the so called Sarcoidosis " experts " love so much even though the FDA has never approved this approach in medications for Sarcoidosis. In contrast two of the drugs used in the Marshall protocol HAVE been approved by the FDA and given orphan drug status for sarcoidosis. The Benicar approval is still pending. LDN helps immune function for Sarc, but nowhere near to the extent that the MP does. People with Sarc will be rushed to ERs to be given immuno-suppressants and admitted to often times die when on traditional " treatment " plans. The Marshall protocol strives as hard as is possible to control immunopathology to keep people out of the hospital. Some people may be just too sick though to perhaps hope for total recovery and not willing to make the life-style changes required for a cure and will find that LDN is the next best option available as it is not focused on suppressing immune function. If you are interested in interviews with people who have sarc who are recovering on the MP see: Interview with Jane -Aoki: Neurosarcoidosis, systemic sarcoidosis; spasticity, myasthenia, CNS dysfunction, joint pain, pulmonary, splenic and cardiac involvement http://bacteriality.com/2008/03/02/interview17/ Interview with Gene – sarcoidosis, bladder cancer http://bacteriality.com/2008/07/18/interview24/ Interview with Roy P. - sarcoidosis, rheumatoid arthritis http://bacteriality.com/2008/06/03/interview21/ Interview with Sherry Cook - sarcoidosis, cat scratch fever, restless leg syndrome http://bacteriality.com/2007/11/19/interview13/ There are more sarc interviews there too. best,P.B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 What is ABR? ABX is antibiotic protocol, right? Or not? Judy I have read about his protocol and am not sure if I personally feel comfortable with doing it. Using the ABR at a high dose with an ABX can cause crisis and land one in their local ER with NO back up. (an internet site cannot help the ER docs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 What was said here is right on. I researched the MP and used it, it cured me. I'm on the LDN, fibally got rid of last few finger joint pain and psoriasis. It was devepled specicifaclly for Sarc. marshall had Sarc. Liz, We all have to do what we feel comfortable with. The problem is that people will almost all die from Sarc so waiting too long may not be the best option. LDN is a palliative option that is much better than the usual prednisone or other immuno-suppressants that the so called Sarcoidosis " experts " love so much even though the FDA has never approved this approach in medications for Sarcoidosis. In contrast two of the drugs used in the Marshall protocol HAVE been approved by the FDA and given orphan drug status for sarcoidosis. The Benicar approval is still pending. LDN helps immune function for Sarc, but nowhere near to the extent that the MP does. People with Sarc will be rushed to ERs to be given immuno-suppressants and admitted to often times die when on traditional " treatment " plans. The Marshall protocol strives as hard as is possible to control immunopathology to keep people out of the hospital. Some people may be just too sick though to perhaps hope for total recovery and not willing to make the life-style changes required for a cure and will find that LDN is the next best option available as it is not focused on suppressing immune function. If you are interested in interviews with people who have sarc who are recovering on the MP see: Interview with Jane -Aoki: Neurosarcoidosis, systemic sarcoidosis; spasticity, myasthenia, CNS dysfunction, joint pain, pulmonary, splenic and cardiac involvement http://bacteriality.com/2008/03/02/interview17/ <http://bacteriality.com/2008/03/02/interview17/> Interview with Gene - sarcoidosis, bladder cancer http://bacteriality.com/2008/07/18/interview24/ <http://bacteriality.com/2008/07/18/interview24/> Interview with Roy P. - sarcoidosis, rheumatoid arthritis http://bacteriality.com/2008/06/03/interview21/ <http://bacteriality.com/2008/06/03/interview21/> Interview with Sherry Cook - sarcoidosis, cat scratch fever, restless leg syndrome http://bacteriality.com/2007/11/19/interview13/ <http://bacteriality.com/2007/11/19/interview13/> There are more sarc interviews there too. best,P.B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 THIS POST IS FOR BALANCE: What is said below is true, but not the whole picture, however. There are many people who get WORSE on this protocol, and NOT because they are "herxing" but because something else is going on, something that is not yet understood. I got much worse. But I am a Lyme patient, not a sarc patient. But I know a sarc patient who got much worse, too, going from sick but functional to completely disabled, unable to leave the house, all in a matter of eighteen months. Yes, many do improve. But, for whatever reason, they do not tell you about the ones who don't, and when they do, rather than blame the protocol -- which appears to be "treatment-failure proof" -- they blame it on the patient. LDN has helped dig me out of the hole that protocol put me in. Proceed with caution. In a message dated 8/7/2008 11:53:20 A.M. Eastern Daylight Time, rball@... writes: What was said here is right on. I researched the MP and used it, it cured me. I'm on the LDN, fibally got rid of last few finger joint pain and psoriasis. It was devepled specicifaclly for Sarc. marshall had Sarc.Liz, We all have to do what we feel comfortable with. The problem isthat people will almost all die from Sarc so waiting too long may notbe the best option. LDN is a palliative option that is much betterthan the usual prednisone or other immuno-suppressants that the socalled Sarcoidosis "experts" love so much even though the FDA hasnever approved this approach in medications for Sarcoidosis. Incontrast two of the drugs used in the Marshall protocol HAVE beenapproved by the FDA and given orphan drug status for sarcoidosis. TheBenicar approval is still pending. LDN helps immune function for Sarc,but nowhere near to the extent that the MP does. People with Sarc willbe rushed to ERs to be given immuno-suppressants and admitted to oftentimes die when on traditional "treatment" plans. The Marshall protocolstrives as hard as is possible to control immunopathology to keeppeople out of the hospital. Some people may be just too sick though toperhaps hope for total recovery and not willing to make the life-stylechanges required for a cure and will find that LDN is the next bestoption available as it is not focused on suppressing immune function.If you are interested in interviews with people who have sarc who arerecovering on the MP see:Interview with Jane -Aoki: Neurosarcoidosis, systemicsarcoidosis; spasticity, myasthenia, CNS dysfunction, joint pain,pulmonary, splenic and cardiac involvementhttp://bacteriality.com/2008/03/02/interview17/ <http://bacteriality.com/2008/03/02/interview17/> Interview with Gene - sarcoidosis, bladder cancerhttp://bacteriality.com/2008/07/18/interview24/ <http://bacteriality.com/2008/07/18/interview24/> Interview with Roy P. - sarcoidosis, rheumatoid arthritishttp://bacteriality.com/2008/06/03/interview21/ <http://bacteriality.com/2008/06/03/interview21/> Interview with Sherry Cook - sarcoidosis, cat scratch fever, restlessleg syndromehttp://bacteriality.com/2007/11/19/interview13/ <http://bacteriality.com/2007/11/19/interview13/> There are more sarc interviews there too.best,P.B. Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 someone please explain what ABR & ABX ARE?? sometimes, it is best to spell these abbreviations out; as everyone who reads these messages know what initials stand for!! thanx marshiris@... Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 For ABR, I believe the poster meant to say ARB. ARB = angiotensin receptor blocker ABX = antibiotics In a message dated 8/8/2008 11:34:25 A.M. Eastern Daylight Time, marshiris@... writes: someone please explain what ABR & ABX ARE?? sometimes, it is best to spell these abbreviations out; as everyone who reads these messages know what initials stand for!! thanx marshirisaol Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Liz I think that is a real problem with the MP. A serious lack of published results or follow-up on patients, no idea overall how many are helped, and no idea the percentage who drop out. There is a serious lack of information given out about the results other than the usual success stories posted on the Internet. I think it probably does help some of the people but the info given out is so incomplete and almost no peer reviewed papers on pubmed or anywhere that I am aware of. It could be a great breakthrough or a treatment with very limited success in helping a small percentage of those who try it. We just don't know. At least that is my take. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2009 Report Share Posted September 11, 2009 My brother has been on 4.5 MG for Sarcoidosis since April 07. I don't see him much but when we talk he's still stable, went back to playing SOFTBALL (he's almost 60!) and doesn't sound like he's hacking up his lungs any more. I mentioned it in MyStory, nothing new to update though. Good luck. [low dose naltrexone] sarcoidosis My husband has been diagnosed with sarcoidosis. Does anyone take LDN for that here?ThanksLiz------------------------------------ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.