9 Aug 2008
The actor and comedian Bernie Mac died today, and it was because of sarcoidosis. Preliminary news reports say otherwise. A statement by Mac’s publicist, who very likely got it on authority from his doctors, said that it was the “complications due to pneumonia” which ended his life. Mac had suffered from the disease sarcoidosis for 20 some years.
Pneumonia is a lung disease, and the lungs of a patient with sarcoidosis are greatly weakened by the chronic intraphagocytic metagenomic bacteria that cause the illness. Though it is truly a deadly disease, Mac expressed little concern, publicly at least, about sarcoidosis. Mac was likely convinced by his doctors that sarcoidosis could be successfully kept at bay by high doses of immunosuppressants. In one statement, Mac said his sarcoidosis had “gone into remission” around 2005.
The evidence says that sarcoidosis doesn’t go away. The 2003 NIH ACCESS study followed 215 sarcoidosis patients for two years. Two years is the period during which it is sometimes mistakenly thought that the disease can go into remission. NIH ACCESS found that measures of sarcoidosis severity remained unchanged over the two-year period, despite the fact that many patients were using corticosteroids and other immunosuppressive drugs– and despite the fact that the study’s authors went to great lengths to equivocate about what their data really meant.

In fact, in the NIH ACCESS study there were no documented cases of spontaneous remission. Even in the positive-sounding “improved” category for clinical markers, the percentages described were at best “improved”, not “better” and certainly not “cured.” The study also concluded that most patients with persistent sarcoidosis at two years were “unlikely to have resolution of the illness” and that “end-stage pulmonary sarcoidosis usually develops over one or two decades.”
In simple terms, the study found that not one patient recovered over a two year period, and that any patient to remain ill with sarcoidosis for two years is likely to die from the disease over the following ten to twenty years.
When asked, Mac’s publicist indicated his pneumonia was unrelated to his sarcoidosis, but those of us who know better realize that the opposite is true. Many of the chronic bacterial species that cause sarcoidosis create substances that block the Vitamin D Receptor - a fundamental receptor that controls many components of the innate immune response including transcription of the bulk of the body’s antimicrobial peptides.
Mac’s choice to be treated with the “first-line treatment” for sarcoidosis - immunosuppressants including prednisone no doubt - was doubly unfortunate. Doing so inactivates the innate immune system, which allows a heavier load of VDR-dysregulating bacteria to accumulate… which, in turn, further inactivates the innate immune system. In such a state of disrepair, the immune system has little recourse in its fight against an otherwise easily dispatched strain of pneumonia.
Clearly, Mac’s doctors incorrectly faulted an overactive immune response for the disease. Without being too dramatic, it’s also clear their ignorance had deadly repercussions.
Mac’s story is Exhibit A that sarcoidosis is deadly. Also, it is an apt example of how mortality associated with sarcoidosis goes underreported in cases where opportunistic infections are erroneously attributed to be the cause of death. According to much of the medical community, Mac’s sarcoidosis was in remission and an unrelated case of pneumonia was the cause of death. No wonder statistics on sarcoidosis and death are inaccurate. If a patient succumbs to a co-infection directly related to the sarcoidosis disease process the co-infection is blamed rather than sarcoidosis itself.
A look back to Mac’s comments about sarcoidosis in 2005 show just how uninformed he was about his disease.
Four years ago, Mac announced to the public that he had sarcoidosis, communicating through his publicist that he had been dealing with the disease since his 20s.
Yet, he contended, “I’ve had sarcoidosis since 1983, and it has not altered or limited my lifestyle. No one knows where sarcoidosis comes from or where it starts, and there’s no known cause for this condition that affects primarily minorities.”
Despite this blithe statement, the actor was promptly hospitalized after completing work on Ocean’s Twelve and filming on the fourth season of The Bernie Mac Show was subsequently delayed.
Initially, a Fox representative said Mac was merely taking a self-imposed hiatus because he was suffering from exhaustion, brought on by a heavy work schedule. But the network later said Mac was suffering from pneumonia. In fact, his publicist finally admitted that he “had double pneumonia which weakened his lungs and his entire immune system, and the sarcoidosis symptoms became pronounced.”
The same publicist was quick to point out that sarcoidosis is a “treatable illness and not deadly.” In his statement, Mac says, “I still walk, play basketball and do normal things…. Since sarcoidosis hasn’t slowed me down, then it shouldn’t be a concern for others.”
While Mac’s death is certainly tragic, a second tragedy is the misinformation he and his publicists repeated. Perhaps he was forced to pretend that he was feeling well despite his sarcoidosis symptoms so that he would not be asked to give up any movie roles or sitcom appearances.
But anyone familiar with sarcoidosis knows that Mac must have been suffering greatly from the illness, and his case of “double pneumonia” in 2005 makes it obvious how ill he really was. Mac could have done a service to the community by communicating the actual seriousness of his disease to the public, but instead he made the mistake of accepting the statements of his doctors as an accurate depiction of sarcoidosis.
How long will it take before sarcoidosis is given full credit for the deadly disease that it is? More importantly though, how long will it take for the breadth of the medical world to finally acknowledge that the cure for sarcoidosis exists and has already cured people? It’s disturbing that ever since biomedical researcher Trevor Marshall published the landmark papers “Sarcoidosis and Antibiotics: Reflections on the First Year” in 2003 and “Sarcoidosis Succumbs to Antibiotics” in 2004, physicians and the FDA have been privy to the scientific knowledge that allows sarcoidosis to be treated correctly. Yet, as in Mac’s case, they continue to turn to conventional dogma when treating the disease in place of embracing the paradigm shifts necessary to understand the illness at the molecular level. One thing is for sure - if Bernie Mac had been treated with the Marshall Protocol he would be alive and well today.
Even those people who have yet to understand the potential of the Marshall Protocol should at least be forced to admit that the standard treatment for sarcoidosis - the ample use of corticosteroids that weaken immune function - puts patients in a place where they can easily succumb to infections. So Mac’s death makes it clear that conventional treatment for sarcoidosis is not only ineffective but also quite dangerous and even life threatening.
We also can hope that while tragic, Mac’s death may at least cause the medical community and the public to raise an eyebrow about the fact that attempts to deny the seriousness of sarcoidosis do little to stop the disease from taking lives.
82 Responses for "Bernie Mac didn’t have to die - pervasive misconceptions about sarcoidosis"
Well written, Amy. Thanks for the article. I’m going to forward to my family members/friends just asap.
Amy,
Wow… I just logged onto the site and read this information. No dobut, it will be on the main web browser pages soon touting that pneumonia was in fact the culprit and not sarcoidosis.
What a shame for his family and just a sad thing to think about in general. I can only imagine what it was like for Bernie Mac to “put on a happy face” and try and live a “normal” life in the public arena, while suffering greatly in private — as I am certain anyone reading these posts can greatly empathize.
Since my last postings, I have offically begun my MP. So far so good. I am herxing a bit from the Benicar (so happy for each one) and ramping up slowly on the Abs.
While it is a great step forward and I’m excited and encouraged by my progress, my family is having a little bit of a difficulty adjusting to my lifestyle changes. I know my need to reassure everyone will subside as my health status progresses in a positive direction.
This article could not be more timely, as it relates to my health and many others who would put off trying the MP, out of fear that it wasn’t accepted as conventional treatment.
I have never been one to take things at face value and perhaps that has saved me in more ways than one, but I am astounded to read articles like this one about people with the financial means and most probably the “best doctors” around that don’t exhaust every means necessary to regain their health. Is it possible Mr. Mac just accepted the doctor’s advice on sarcoidosis? Or had he just convinced himself, like so many do that “this must just be the way it is” and stopped looking. I don’t know, I am just scratching my head on this.
I hope that anyone reading this article, that is fearful about trying the MP or convincing a doctor to be open to the possiblity, trust themselves and the science behind the MP and give it a chance.
Thank you for all of your thought provoking articles and hard work on this site. Helping to spread the news about the MP and the countless others that are getting the word out are saving lives!
Good luck in your grad school pursuits. I hope to be venturing back down that path in the near future as I truly regain my health and my life!
Best,
Shari
They say prednisone “gets the patient back on his feet…so he can walk all the way to the autopsy table”. I’d say Bernie Mac was “living” proof of this.
I am unceasingly amazed at how blithely doctors prescribe steroids, while cringing at the idea of
“high” dosages of Benicar (160 mg/day). Only last week the senior physician at the
world-famous Shea Ear Clinic tried to inject me with
Dexamethasone as the FIRST LINE of treatment of
Meniere’s Disease, for which I exhibit only one of the
four standard symptoms. I refused the treatment.
My husband continues to try to break free of two+ years of prednisone treatment for R.A. Seems like half the people I talk to are taking some kind of steroid therapy. It’s an alarming situation…hope-fully the death of this relatively young man will open opportunities to discuss the treatment that could
have saved his life (Marshall Protocol).
Hi Vicki,
That first quote is a pretty accurate description of what happens when a patient starts to take steroid medications! I’m so glad that you refused the dexamethasone injection. In fact, I congratulate both you and your husband for making an effort to get off or avoid steroids.
When one considers how many people are on steroid medications and the level of immunosuppression those individuals are experiencing, it is definitely a very scary thought. Over the past decades we have seen a great rise in the number of people with nearly every chronic disease and it’s not a coincidence that this rise correlates with steroid use. A few days ago, I read the results of a study which claimed that all Americans will be obese by 2040 if obesity continues to escalate at the current rate. Since steroids slow the immune system from targeting pathogenic gut bacteria likely involved in obesity the results are not surprising.
I hope you and your husband can benefit from the MP!
Best,
Amy
Amy,
I find your article tasteless and inappropriate given the recency of the passing of Mr. Mac. Your criticism of his course of treatment is extremely overstated unless you, in fact, were his doctor.
Rachel
I find your article tasteless and inappropriate given the recency of the passing of Mr. Mac. Your criticism of his course of treatment is extremely overstated unless you, in fact, were his doctor.
Rachel,
I’m puzzled as to why you would call the piece tasteless. If Bernie Mac were the last person to have sarcoidosis, I might concede the point, but there are tens of thousands of patients with sarcoidosis and similar inflammatory diseases who continue to be treated with immunosuppressants as a first-line treatment… and in the absence of evidence. In fact, there is growing evidence which says diseases like sarc are caused by infection and treatable with the Marshall Protocol. The corticosteroids that Mac was treated with pose great danger to people with sarcoidosis and it’s important that those dangers be communicated.
Amy
I am hoping that someone with money (Oprah, where are you?) and/or someone who has this disease will fund a MP study that will meet all of the criteria the big boys seem to require to adapt a protocol that is based in science and works, instead of continuing to see people suffer and die while researches receive packet change for resreach and fund $50,000 or $100,000 to study such unhelpful things like, “what is the quality of life for sarcoid sufferers?” or “exercise programs for suffers” or anything that does not help us understand more about the cause and treatment of the disease.
I also wonder about the high-profile Africian Americans that have died from this disease, such as Reggie White, yet I have not heard of many white stars that have this and die from it. Didn’t the ACCESS report state that it was a myth that more African Americans had more deadly effects from the disease?
Hi Stage1,
I feel it’s only a matter of time before a celebrity does the MP. Since our culture is very driven by what celebrities say and do, such a situation could be very beneficial indeed. And yes, it would be nice if such a person had money to donate to the cause!
One problem is that celebrities are so protected by their publicists that it’s literally impossible to contact them. This certainly seems to have been the case with Mac. Also, doctors are always jumping to treat high-profile celebrities so they tend to get so much care from mainstream doctors that it seems like few, if any of them, feel any need to get on the internet and research their diseases on their own. In contrast, many of the rest of us ordinary folk get rejected or scorned by doctors and in turn are forced to look for other solutions for our diseases (we hopefully find the MP!).
Yes, you are correct. The access study found no higher prevalence of sarcoidosis in African Americans than in the rest of the population. If you look at the patients doing the MP for sarcoidosis, nearly all of them are not African American, showing that a lot of people of other races get the disease. Maybe it’s just a coincidence that both Mac and Reggie White were African American, although I can’t be sure.
Best,
Amy
Bravo!!!! Great piece!!!
This is a great article and I only wish that the rest of the public knew this. So many people suffer from sarcoidosis and it doesn’t get the attention it needs to find some sort of progression with treatment. The mainstream new media will continue to call this disease which has nothing to do with his death or pneumonia “inflammatory lung disease”.
Thanks David!
The sad part is that the Marshall Protocol can effectively treat sarcoidosis and it has existed for several years now. Yet the medical world is so slow to accept paradigm shifts in medicine that patients are still being treated with old methods that suppress the immune response and allow the disease to continue spreading. Hopefully as Dr. Marshall continues to speak at some of the top conferences in the world acceptance and understanding of the MP will continue to spread and deaths like Mac’s will be prevented.
Best,
Amy
Thanks Amy! My mother has sarcoidosis and informed me that Bernie had it years ago. She predicted that if he didn’t get on the MP, he wouldn’t make it. She was right, unfortunately. I guess with his popularity status (being a celebrity and all) he decided to take the easy way out. It’s too bad for his family and friends. Everybody wonders why he died so young and if they read your piece, they will know. And thanks Mom for the 4-1-1…I love you and I know you’ll make it!
I guess with his popularity status (being a celebrity and all) he decided to take the easy way out.
Jeff,
In that sense, Bernie Mac is not unique. These days, the ignorant pulmonologists who prescribe corticosteroids are placing a tremendous burden on their patients. I’m sure you’d agree: it shouldn’t have to be up to a patient to figure out his doctor is wrong. In the meantime, let’s hope sarc patients being given the standard harmful treatment have sense enough to second-guess their doctors.
Amy
from my understanding MP requires you to stay out of sunlight and I work outdoors. I have a sales job that doesn’t offer sick days, I’m 1099 so it’s like I’m a freelance salesman with few benefits. I’m interested in learning more about this and I will ask my doctor when I see him tomorrow just to gauge his response. Thanks Amy
As for Rachel’s comments, I can probably assume she has no idea what it’s like to have a chronic autoimmune disease. Amy may not be a doctor but I can tell you how many times I have visited doctors where I know more about my disease than they do.
Hi David,
It is quite common for MP patients to become light sensitive, but the extent to which a person becomes light sensitive depends on the extent of their bacterial load. If you are still able to hold a job it sounds like you are better off than most of our subjects (I’m sure you’re struggling but as an estimate) so you may not be as light sensitive as some. This short piece describes light and the MP in greater detail:
http://bacteriality.com/2008/02/23/misconceptions/#8
Other people who have continued to work while on the MP have generally found that their employers have been more than willing to adapt work environment if necessary (lest they be accused of not treating someone with a “disability” incorrectly). Usually they allow shades on windows to be pulled down at meetings or for employees to wear sunglasses when on the computer if necessary.
But if you’re a freelance salesman I’m not sure if you spend time in an office. In those cases hopefully wearing long dark clothing while traveling between customers (you can take some of the layers off before seeing them) might help. Also if you wear glasses in the car and at other times, you’ll probably be OK taking them off when talking to customers if the lights arn’t too bright. Of course, you’ll only know if you give it a try.
I didn’t have insurance for my first 3 years on the MP. It’s possible to order generic Benicar (which works just as well as the regular kind) from India through Canadian pharmacies for about $60 a month (links are on the MP site). The antibiotics are generally pretty inexpensive and if your doctor is kind enough to prescribe you the amount of antibiotics that would be used to treat a standard infection one bottle can last you for months because they are used at such lower doses on the MP. I had my doctor prescribe me one bottle of a phase II antibiotic that lasted for an entire year, so the MP has not been a great expense for me….at least compared to most other treatments out there!
I hope you doctor allows you to give the MP a try. If he’s not open minded I suggest looking for another doctor. You’re health is so important that it’s worth the extra effort.
Best,
Amy
I’m not so sure I agree with blaming everything on Sarcoidosis. You were not the doctor that was handling his case, so how do you know it was directly related to Sarcoidosis? You can only guess. You seem to be “sensationalizing” his death to advance the MP cause. The MP has it’s place, but don’t sensationalize things to pump it up.
I know Sarcoidosis is not a fun disease, and it is possible that it takes life, but more often, people with it live a full life span, despite what the ACCESS study says - they only looked at 225 or so people over 2 years. The MP people claim that there are hundreds of thousands of people with Sarc. How are they doing? You also mention that the ACCESS study says people with Sarcoidosis never go into remission and they die within 10-20 years. Bernie Mac had Sarcoidosis for almost 29 years. So you cannot put everyone with Sarcoidosis into that category. He certainly didn’t fit into the ACCESS results of 10-20 years and you die and neither did Reggie White - he had it for much longer. And they both took prednisone (which is one of the most evil drugs ever created BTW - but remember, ALL medicine are poisons - even the MP meds!).
I have Sarcoidosis too, and at first, I had trouble dealing with the disease, I even had many bad palpitation problems and the MP people had me thinking (and scared to death) that I had cardiac Sarcoidosis and that the avg life expectancy was 2-5 years. I’m still here and with NO palpitation problems at all like the beginning (in fact I was palpitation free for 2 years after my first round with Sarc) - and I never took and standard treatments for Sarc. I only tried the MP for a couple months. Everything was back to normal for me after a few years - absolutely no health issues related to Sarcoidosis whatsoever, and again - I was never treated with any prednisone.
For me, Sarc symptoms seem to run in 18 month cycles, 18 months perfectly normal, 18 months mild Sarc symptoms. I was DX’d in Jan 2003. Are you telling me I only have 5-15 years left to live? You can’t possibly know that.
You also mention that people on the MP have been CURED. Do you have documentation on CURED people? How do you define CURED? Everyone I have talked to about the MP said they are not CURED, just as close to normal as possible, but they will have the disease for the rest of their life. That is why Trevor Marshall said to use the MP for a few months every year to clean up any bugs that may accumulate over time. CURE to me means Sarc is totally erradicated for good, with no need ever to use the MP again. That is impossible though because people with Sarc are genetically programmed to get Sarc.
All I know for sure is one thing…when God no longer has a purpose for me on this Earth, I will die. With Sarc, without Sarc, using the MP or not using the MP. Simple, doesn’t matter.
But - if people with bad cases of Sarc can use the MP to get as close to normal as possible, absolutely go for it.
I think the morbidity is much worse than the mortality rate for this disease - for some people. I have been bodybuilding for 2-3 years now - with Sarc! I’m going to be entering BB contests in a year or two. So Sarc has not been severe for me (Praise the Lord) and I AM living a normal life. But I still have Sarc, and I get mild symptoms from time to time. So what I am saying is that not everyone with Sarc is severe, not everyone who dies with Sarc dies FROM Sarc, not everyone who has Sarc will only live 10-20 years. So to recap my issue with your post, don’t lump everyone together in generalized statements about Sarc, because everyone is different in how they live with Sarc.
And don’t be so quick to blame everything on Sarcoidosis, and don’t state that there are people who are CURED, when they are not - even if they are as close to normal health as possible. That’s my 2 cents.
Oh, by the way - what do the MP people think about Inflibmax successfully treating cardiac sarc? I say that on Pubmed.
Dear TRogers,
You know, I really hesitate to give advice to someone who doesn’t want to hear it, but your message tells me you are very much in denial. The ability to bodybuild or the temporary absence of symptoms is inconsequential. Exactly how deadly sarcoidosis is is something for the epidemiologists to debate, but for one thing’s for sure: it doesn’t just go away.
When is the last time you heard of a healthy person dying of pneumonia? The only reason infections, like pneumonia, go away is because the immune system eradicates them. Why wouldn’t you want to activate your immune system by doing the MP?
For your information, I am not uncomfortable using the term “cure.” And neither do any number of satisfied and healthy MP patients that I have interviewed (see sidebar). The MP is not a quick fix, but it does address root causes even if it does take multiple years.
Best,
Amy
First let me say my condolences to the Mac Family.
Amy,
Now,
thank you for igniting a torch.
Trogers I would like to thank you to for adding fuel to the fire. I have read this debate thoroughly and realized that i needed to really get my act together and really understand my/our disease. I am a person living with Sarcoidosis and right now I am concerned. this is the for me the fourth person that i have known to die way to early and just happen to have been diagnosed with Sarcoidosis. (second celebrity: Reggie White)
When I was first diagnosed I had incompetent doctors that knew nothing about the disease. it was all guess work and referring to medical journals. then I had to take over and figure something out on my own. Thank God for insurance that lets you go just about anywhere in this country for help, because I saved and went to find out what the hell this disease really is. Thank God for internet because I have been able to search all over for info about the disease. now I come to this article.
Luckily now I have found a really good pulminologist who knows what he’s doing and doesn’t mind talking to me about the disease at length. especially when it comes to alternative treatments. Now let me say this my pulminologist jumps if I get the sniffles. He knows that a simple flu could be devastating therefore Amy I hear you when you talk about sarc had something to do with Bernie Mac’s death. but c’mon 10 - 20 years. Bill Russel is in his 70’s I believe and he is living with the disease and so is his daughter who is also in her 40’s. PLease don’t try to scare your point across. I hate to think that i will not live past my daughters 21st birthday. But I do thank you because this article will begin a strong discussion between myself and my pulmunologist.
People do not be afraid to question what your Doctor says. you Might have a doctor that got a C in the class that deals with what you have. Always remember that!!!
Hi PYC,
Thanks for writing. I’m glad that you seem to be taking charge of your health and have a pulmonologist who is willing to listen to you and seems open-minded. I hope you bring up the MP at your next appointment.
I didn’t generate the statistic which states that people with sarcoidosis are likely to die within 10-20 years from the disease. That was simply the conclusion reached by the ACCESS study, so I’m just relaying their conclusions. I agree that there are definitely cases where people with sarc live longer than that statistic implies. Also, the patients in the ACCESS study could have been sick for over two years before joining the study. Some may have had sarc for quite some time before participating. So those that died may have already had sarc for quite a while before the statistics were gathered. Still, it’s hard to deny that the disease seems to be the eventual cause of death among individuals who have it.
Luckily you can effectively treat your sarc with the MP and shouldn’t have to deal with such circumstances at all!
Best,
Amy
So sorry about Bernie Mac, I also have Sarcoidosis and I have been on the Marshall Protocol. Cannot understand medical system refusing MP to patients, very sad.
“Mac also suffered from sarcoidosis, an inflammatory lung disease, but he had said the condition went into remission in 2005. His publicist, Danica Smith, has said the pneumonia was unrelated to the sarcoidosis”—— from newspaper today.
Anyone who has ever worked in healthcare knows that when an organ is compromised, it is more likely to be unable to fight off infection.
I don’t know the extent of Bernie’s lung involvement, or what kind of medications he was on or not on, or how a systemic infection could have played into overwhelming pneumonia and organ shut-down, but certainly one would wonder why a 50 year old healthy person could not fight off pneumonia. Pneumonia usually kills the very young, the very old, or people with compromised immune systems.
Sarcoidosis, as TRogers points out, does not go away. It is a chronic disease. It compromises your immune system.
I have done hundreds of hours of research on the internet, read many, many studies and LOOKED for something negative about the MP (I couldn’t find anything negative except that it hasn’t had a double blind study.) What I found is this: Studies entirely independent of the MP (from other countries, universities and other researchers affirm that sarcoidosis involves a compromised host (acquired v/s genetic) and an environmental factor. Many studies indenpendent of the MP point to mycobaterium and other bacteria as “suspect” and other studies have actually grown bacteria has been grown out of sarcoid tissue, using special methods not commonly used to culture biopsied tissue. The theory of the compromised host and a bacteria is not unique to the MP, nor is the Vitamin D receptor (innate immunity.) If you go to the Mayo Clinic and Cleveland clinic site, they advise people to avoid Vitamin D and the sun, and to watch their calcium and reduce dietary calcium if it is too high.
We all have to figure out how to deal with this disease with the uncertainty, the mixed messages and the chronic nature of the disease. Personally, I am not a “wait and watch” kind of person. I also like science. What I see with the MP is a scientific approach to finding the cause and treatment, and a study that has yielded very good results for some folks that have been very, very sick for a long, long time. I would rather try what appears to be a rather benign approach to addressing this disease in the earlier stages than to watch my health fall apart. Really, what would anyone have to lose by trying the MP, especially when you consider the alternatives?
Hi Stage 1,
I very much agree and you bring up some good points about how there is nothing radical about the MP. Rather, the treatment is approach is extremely logical - based on solid molecular and clinical evidence, and extremely safe. Benicar has virtually no side effects and the antibiotics are taken at such low doses that they have little if any effect on immune function. Simply put - there is much more danger in letting your illness progress unchecked or taking immunosuppressive steroids than doing the MP.
When people speak about “dangers” related to the MP I think they are misinterpreting the immunopathogy reaction as a sign of “getting worse.” Some patients are unable to twist their minds around the reality that in order to kill chronic bacteria, a die-off reaction that causes a temporary exascerbation of symptoms is inevitable. But this reaction is expected and part of the MP and implies recovery rather than a rise in disease.
Thanks for sharing your insights!
Amy
Amy said,
“If you look at the patients doing the MP for sarcoidosis, nearly all of them are not African American, showing that a lot of people of other races get the disease.”
And we should be careful to draw conclusions of any kind from this. Perhaps less African Americans are aware of the MP. IMHO- all the more reason it’s highly unfortunate that the MP appears destined to remain in the Internet ghetto as opposed to being subjected to conventional scientific processes (peer-reviewed, etc).
Hi Nigel,
Yes you are right. I did not mean to imply that African Americans are less likely to suffer from the disease than whites, only that whites also get sarcoidosis. Sometimes the media can make it sound as if one only has to worry about getting sarcoidosis if they are African American and that is the myth I was trying to dispel.
You’re right - we don’t know if information about the MP reaches people of all races evenly. You do need a computer to get the treatment guidelines and understand the science behind the MP. And you need a certain level of income to afford the medications.
Thanks for making the above clear.
The MP will stay in an internet Ghetto? Absolutely not. I’m not sure what you mean. Dr. Marshall has numerous peer-reviewed papers including his recent paper in BioEssays - a very respected peer reviewed journal. Not to mention that he’s traveling the world, speaking about the MP at some of the most prestigious scientific conferences. In fact, he’s chairing the entire session on vitamin D at the upcoming Congress on Autoimmunity in Portugal which is a huge event that will be documented by several peer-reviewed journals.
Amy
Stage 1 said-
“I have done hundreds of hours of research on the internet, read many, many studies and LOOKED for something negative about the MP (I couldn’t find anything negative except that it hasn’t had a double blind study.)”
Stage 1, let me help you with that:
http://heartscanblog.blogspot.com/2008/03/marshall-protocol-and-other-fairy-tales.html
http://stuff.mit.edu/people/london/universe.htm
There are others I’m sure, but these are a good start. Kudos to Amy for allowing differing opinions here; the unwillingness to do so on some MP forums has given fuel to MP critics.
Hi Nigel,
I’ve seen these links before.
For everyone who may not know better Mark London is not a professor at MIT. This is a personal page and a long rambling one at that. Mr. London was kicked off the MP site for not complying with the MP guidelines. Clearly he has a grudge against the treatment. Having personally spoken with him for half an hour, let me assure you that he doesn’t have even a basic understanding of the MP– certainly not enough to offer even elementary counterarguments.
The other link is to a blog by a Dr. Davis who accuses Marshall of quackery. It’s interesting that they invited a quack to chair the session of vitamin D at the Congress on Autoimmunity or to present at Karolinska. Only someone completely unfamiliar with Marshall’s work would call him a quack.
Dr. Davis presents himself as an expert of sorts in the field of cardiovascular disease. Last time I checked there were no mainstream curative therapies for cardiovascular disease. Maybe the good doctor should be more open to having his basic assumptions about disease questioned.
When it comes to Dr. Cannell, the man himself has admitted to taking up to 10,000 IUs of vitamin D a day. He runs an institute which stands to financially benefit from vitamin D being the miracle substance they say it is. Is he in any position to objectively consider Marshall’s counterarguments?
Again, it’s difficult to even respond to Cannell’s critique of the MP, because, like London, he lacks the understanding and training in molecular biology to understand the MP science, and fails to understand vitamin D for the powerful and harmful secosteroid it obviously is.
I should add that neither Mr. London nor Dr. Cannell has ever tried to contact Marshall and discuss the issues at hand. Without scientific discourse, one can only question how they arrived at their judgments.
Nigel, it obviously seems like you have a bone to pick with the MP. Posting links like these can unnecessarily scare people who might benefit from the treatment by giving it a chance.
For those who still have doubts, I would point you to articles written by Stephen Strauss, a journalist who has shone a light on much of the self-interest and spurious claims put forth by vitamin D proponents:
http://www.cbc.ca/news/viewpoint/vp_strauss/20080213.html
http://www.cbc.ca/technology/story/2008/07/07/strauss-vitamind.html
Finally, let me link you to another medical researcher called a quack:
http://www.vianet.net.au/~bjmrshll/features2.html
Of course, now he has a Nobel Prize.
Best,
Amy
Hello,
I have pulmonary sarcoidosis. I am to believe there is nothing wrong and that I have been in remission, but I have felt a consistent and fluctuating burning sensation of my left lung since being diagnosed in 2003. I feel ashamed sometimes while having to almost sell the validity of my symptoms to people when I do explain. For most people it is beyond thier understandiing because of the limited exposure Sarcoidosis recieves, unlike Cancer or Heart disease. For a majority of the time and even with Doctors I have’nt felt comfortable enough to speak about it without feeling as if I am seeking extra attention. I would like to learn more about Dr. Trevor Marshall and his protocol. Thank you.
Hi NM,
Yes, I definitely encourage you to learn more about the Marshall Protocol as it is the only curative treatment for sarcoidosis that exist to date. And as you can see from Mac’s situation you definitely don’t want to go the route of simply palliating your symptoms with steroid medications!
I recommend reading as much information on this site as possible. These articles give an overview of the treatment:
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
The following video also gives an overview of the treatment and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
Then, there is also very helpful information about the Marshall Protocol (treatment guidelines, FAQs, etc) on the study site itself - http://www.marshallprotocol.com
After reading as much information about the treatment as you can at these sources if you still have questions about the MP you can ask them at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria). Your questions will be answered free of charge by patient advocates.
Good luck!
Amy
is there any way to find out EXACTLY what meds Bernie Mac was on? I have taken methotrexate for Lupus ans Spondylitis and am supposed to go back on it. I also took Imuran for awhile and it REALLY bothered me. One of the top side effects for that is it can cause pnemonia.
is there any way to find out EXACTLY what meds Bernie Mac was on? I have taken methotrexate for Lupus ans Spondylitis and am supposed to go back on it.
Connie,
Since the sister did make a comment that BM was on a newer medication, it could be Remicade, but we don’t know for sure. When it comes down to it, all the immunosuppressants are one and the same in the sense that they’re going to compromise your immune system. I’d stay away from all of them!
Have you read about the Marshall Protocol on this site? It aims to treat the root cause of this disease and boost immune function.
Amy
“One thing is for sure - if Bernie Mac had been treated with the Marshall Protocol he would be alive and well today.”
Amy,
You cite misinformation on the part of physicians, FDA and publicists. Yet how can you make the above statement? Unless you are privy to details of this patient’s specific medical history, treatment, and hospitalization experience, then you are unfortunately guilty of similar misinformation — to fans of the comedian as well as patients with the disease.
Craig,
According to People, Mac’s sister-in-law said, “Bernie was on a new medication that suppresses the immune system, and that’s where the pneumonia came from.”
The only thing shocking about this story is how frequently it happens in this “non-deadly disease”, and, in turn, how often we don’t acknowledge what is really at work. Sarcoidosis is a disease process which will, on its own, inhibit innate immune function. When you give a patient an immunosuppressive drug, like Remicade or prednisone (corticosteroids are considered by the vast majority of physicians the first-line therapy for sarcoidosis as evidenced by any number of medical textbooks), you are only further inhibiting the immune system. That’s just a recipe for disaster.
And an all too predictable one at that.
Amy
I think one thing that we may be failing to realize about Sarcoidosis is the disease itself may lead to other issues.
In my mother’s case, the Sarcoidosis led to Pulmonary Fibrosis. She was admitted to the hospital w/ Pneumonia in Oct for a week, let out and then back in 26 Nov and passed away 2 Dec 07. The “cause” of death was Cardiac Arrest, that was brought on by other things but obviously that wasn’t her problem. I could have easily said her cause of death wasn’t related to Sarcoidosis…maybe not directly, but indirestly.
Her lungs were shot! Only 20% of her longs worked so the pneuomonia didn’t have much to do.
I just think we all need to realize that Sarcoidosis IS a disease that CAN take your life. Believe me, losing my mom was the hardest thing I’ve ever gone through. Let’s just all do our part to bring awareness to this terrible disease.
Margrette
I know first hand how Sarcoidosis can disable you. I was diagnosed with lung sardoidosis in January of this year and at the time I got sick, I thought I was having a heart attack. I couldn’t breath and chest and back hurt. I have since had to begin using a c-pap machine. My doctor who treated me in my emergency situation did so by putting me on large doses of Motrin to combat the inflammation and the antibiotic Doxycycline also for the cause of the inflammatory process which was the beginning of pneumonia. To those that think that disease can’t be deadly, I beg to differ. We have to constantly keep ourselves educated about this and other diseases. My rheumatologist told me that this disease is not the same in us (Blacks) as in white people. Most of them can shake it or at least the effects of it. My mother has it also and a second cousin who is crippled and blind due to sarcoidosis. Thank you for your information and please keep it coming.
Hi Kathy,
Thank you for sharing your story although I am so sorry to hear about your suffering.
The fact that several of you close relatives have sarcoidosis supports the Marshall Pathogenesis model in which sarcoidosis is a contagious disease caused by chronic intracellular and biofilm bacteria.
Are you familiar with the Marshall Protocol - the treatment discussed in further detail on this site? It kills these bacteria and thus targets the root cause of sarcoidosis without using immunsuppressive steroids. It’s never too late to turn your health around so I suggest reading about the treatment.
Best,
Amy
Amy,
Your comments are so TRUE. I was diagnosed with Sarcoidosis in 1989 and I have had pnemonia at least 3 times and I am on oxygen 24/7. I Believe Bernie Mac did not have to die. Also, it was stated that the doctors induced Bernie into a coma. I don’t understand why Bernie was induced into a coma. There really isn’t enough discussion and education regarding this disease. Thanks for sharing information about Sarcoidosis.
Linda
I can understand people’s fear of something unknown and outside of the accepted medical establishment, but suffering from this disease for so long gave me the courage to try something new and at that time unproven. I even offered my doctor security by having an attorney create papers so she would not be liable if anything happened to me. She fortunately did not require me to follow up on that but I would have. I know for certain that I would be dead if not for the MP, I would have been blind as well since it not only affected my lungs, lymph nodes, brain, liver and heart but my eyes as well. I am living , still walking, still reading and seeing because of the Marshall Protocol. I have friends who have died of this disease because their doctors refused to give them the rx for this MP treatment. I still miss them. My deepest condolences to Bernie Mac’s family.
hey i jus wanna say i ;oved bernie very much and i will really really miss him and all his funny shows.he was a legend and ond of my very best comedians i’ve ever known and enjoyed.may his soul rest in peace
Amy, I am new to this don’t know much and never heard of the Marshall Protocol. Most of what I’m finding out is from the internet, my rheumatologist and emergency doctor and my cousin. This is the first time I have heard of this but I will be coming back to your site to chat with everyone and learn about the mp. My rheumatologist has treated me for arthritis and fibromyalgia with Lyrica which helps a lot with those problems. He chose not to put me on steroids because of the side effects were greater than the need. Thank you for helping keep us informed.
Hi Kathy,
I’m very glad you plan to return to this site to learn more about the MP. There is also a lot of valuable information about the treatment - such as FAQs and simple explanations - on the study site itself:
http://www.marshallprotocol.com.
If after reading as much as you can about the MP feel free to post any questions you have related to the treatment at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria). The patient advocates on the site will answer your questions free of charge.
I’m glad that for now you are getting some relief from Lyrica but unfortunately it is only a palliative medication and doesn’t target the root cause of your diseases - chronic intracellular biofilm-like bacteria. The MP is the only treatment that will successfully allow you to kill these pathogens and thus regain a true state of health.
Best.
Amy
Hello Amy,
Speaking as a sever sufferer from Sarcoidosis….You have just become my hero. I get sever sarcoids on My face and head which cause sever ingrown hair..more infection and more sarcoids. I am in agony for months straight. They have also found it in My lungs and lymph nodes. I am 34 years old with two children. I break down in tears because it is sucha lonely feeling. I have been responding to blogs for thge last week..I am so sick of hearing that Pneumonia killed Bernie..Sarc did. Just being diagnosed with the disease was an adventure in itself. First doctor told me I was crazy (literally) and suggested i go see a therapist. This started making me wonder if I did. Finally got in to see a dermatologist and he thought I had issues as well. They said I was self mutilating myself. Told them I have to remove the ingrown hairs because it was causing migrane headaches etc.
Though he didn’t believe me..after three visits and a few different types of topical steroids
the dermatologist decided to take a biopsy.. I go through stages where I am O.k..But for like right now..I have sarcoids attacking my face so I am short term. I am trying to get in to see
someone..but they are telling me that I will have to wait a month. My farther died from heart disease at 45..this was back in 85. I know now that sarc was a contributing factor. Roots are from teh west indies..it is my understanding that this puts a person at an even greater risk.
They had me on Plaquenel but after researching I stopped taking it. You pick your poison.Either the treatment kills you or the sarc itself.. ia m going to look into this Mrshall protocol…I feel like I am sitting on desath row. And i have felt this way for at least ten years of my life. I have had symptoms that long..but have just been diagnosed about 3 years ago. I wanted to sue the pants off of those doctors..They made me think I was crazy for all those years. God bless those with sever cases of this disease. It truly is debiltating, depressing
and makes you feel so hopeless.
Thanks again Amy..the best article I have read about this condition. God bless and good luck..BTW..sorry about spelling.
Have my 2 year old on my Lap:)
Hi Derek,
Thanks for your kind words about the article. I’m so sorry to hear about how much you are suffering at the hands of sarcoidosis and about all the negative experiences you have had with doctors.
Although I had/have CFS, like sarcoidosis we now understand that it is a disease caused by intracellular and biofilm-like bacteria. Of course when I was first beginning to suffer from the condition my doctors didn’t know the true cause of my illness either and I was constantly told that I was healthy and needed therapy. In my case I was convinced that I had eating disorders when I was eating just fine and losing weight because I was sick. But it was so hard to stick up for myself!
In any case, I very, very much hope that you look into the MP in much greater depth and hopefully start the treatment. It takes time and effort to kill the bacteria that cause sarcoidosis but if you are only 34 and have young children you must seize the opportunity the treatment provides to truly turn your illness around. The great part about the MP is that since it targets the root cause of sarcoidosis you can fully recover, and what’s more the treatment also strengthens your immune system.
The Marshall Protocol is part of a phase II trial monitored by the FDA. The trial is currently closed but since the guidelines are online you can do the treatment alone with your doctor. The following articles describe the MP in greater depth:
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
Also I highly recommend you watch the following video which provides and overview of the treatment and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
If you have questions about the MP and how to find a doctor the best place to post them is at the following site:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria). The patient advocates on the site will answer your questions free of charge.
So although Mac succumbed to sarcoidosis the same fate definitely does not have to occur in your case!
Best,
Amy
I am a 53 year old African-American female with pulmonary sarcoidosis that went undiagnosed for years. In 2002, I started having severe chest cramps the night before I was to take a flight. Afraid to fly with chest pain, I went to the emergency room for an x-ray. The ER doctor thought it was a muscle strain caused by yard work. The next morning the hospital radiologist call while I was on the way to the airport and told my husband I should make an appointment for a CAT scan ASAP because of unexplained small shadows on my lung. At first my doctors thought it was lymphoma or sarcoidosis, but biopsy results revealed sarcoidosis. I also had an enlarged heart and pulmonary hypertension – all caused by SARCOIDOSIS.
Although I experienced considerable chest cramping caused by necrotic lymph nodes, my pulmonologist decided it wasn’t severe enough to subject me to steroid therapy. I thank him greatly. Rarely now do I feel the chest cramping and I have two small sarc nodules on my face (one I picked off). I thought they were moles and had been on my face for years. I do experience some shortness of breath. Before I was diagnosed, I wondered why occasionally I was too fatigued to get out of bed in the morning. Also, every morning my ankle joints would hurt so badly I could hardly walk. I have also had very bad bacterial pneumonia that was promptly treated. (That my have what Bernie Mac had.)
I personally know two other women who have died from sarcoidosis and have a high school classmate who experienced temporary blindness, has visible scarring, and is on oxygen. So no one should every say or think sarcoidosis is not deadly. It is very debilitating and can be deadly.
I also have alopecia universalis, which is another autoimmune disease. I was told it is unrelated to the sarcoidosis, which is B.S. It started as small round circles on my scalp. When my dermatologist starting injecting my scalp with hydrocortisone, all my hair fell out instantly. The only hair I have now is (maybe) two eyelashes. I am smooth bald all over my body and have to wear wigs. It doesn’t bother me much. If I didn’t work in corporate America, I would go wigless and have my head tattooed just for the fun of it.
I will never take steroid no matter how bad it gets. I monitor my diet for inflammation causing foods and meds. I still have mild symptoms, but pull myself up in the morning and endure the ankle pain. Strangely, once I was diagnosed, my symptoms started to dissipate. I now understand and listen to my body.
Other people are more concerned about me than me. I don’t live my life stressing over sarcoidosis because I can’t reverse it. Sarcoidosis is not going away and I may die from it or not. I never complain and most folks don’t even know I have it. This is also why I say and do as I please. I don’t know what tomorrow brings, so I am going to enjoy today.
Sarcoidosis lives with me, I don’t live with it.
Valerie,
When it comes to treating autoimmune illnesses, steroids are everywhere, aren’t they? Bernie Mac was prescribed them. Your doctor wanted to administer them to you. Even for a condition like alopecia universalis, what treatment was suggested? Hydrocortisone, a steroid hormone produced by the adrenal gland.
This last anecdote is particularly interesting to me, because my boyfriend’s sister, like yourself, has no body hair– except for a couple eyelashes really. My boyfriend tells the story of lightly tugging on her hair (he was 10, she was eight) and pulling back only to be holding a huge clump of hair. The sister’s hair gradually fell out over the course of the next few years. At the time, she enrolled in a study for the steroid substance which would later be marketed as Rogaine: minoxidil. During the trial, she noted that minoxidil’s efficacy was short-lived. That’s typical for steroids’ effects on autoimmune illness. They just don’t work.
I also think you are right on track to note that your alopecia universalis is connected to your sarcoidosis. These illnesses show up in bunches. In September, I’ll be giving a presentation in Porto on Hashimoto’s Thyroiditus. One of my slides shows that among the cohort of patients who have been diagnosed with Hashimoto’s, only 8% have Hashimoto’s alone!
When you say, “I don’t live my life stressing over sarcoidosis because I can’t reverse it,” I must disagree with you. You most certainly can reverse it by using the Marshall Protocol. That is the focus of this entire site.
You sound like a thoughtful and proactive woman. If I were you, I would do whatever it takes to get on the MP.
Thus far, I’ve interviewed about five sarc patients who have recovered using the MP (see the sidebar under patient interviews). Here’s one you might appreciate:
http://bacteriality.com/2008/03/02/interview17/
Here are two articles that describe the Marshall Protocol in greater detail.
“About the Marshall Protocol”
http://bacteriality.com/about-the-mp/
“Getting it right: how to correctly target L-form and biofilm bacteria”
http://bacteriality.com/2007/10/11/antibiotics/
If you have more questions about the Marshall Protocol a good place to ask them is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure my Th1). The patient advocates on that site who volunteer for Autoimmunity Research Foundation will answer your questions free of charge.
Best,
Amy
My thoughts a prayers goes out to the family of Berni Mac,He was the first comedian to really make me laugh.He will truly be missed.
Beacuse of his death and this article so many sarcoidosis patients will live. I have had sarcoid since 1978. But sarcoid did not have me. Dealing with this disease is a mind -thing. Mind over matter.
I never heard of the Marshall Protocol before. I went into remission in 1980. The disease became active again in 1999. I was put on prednisone. But also. with my treatment plan my doctor put me on three different antibiotics, to rotate, doxycyclin, ammoxclin and Bactrium. I remained on prenisone for 2 years starting with 40 mg.Eventually decreasing to zero. I have been off prednisone for the pass 2 years. Beause of the steriods and sarcoid,I have diabetes, ,conjestive heart failure,pulmonary hypertension,Gerd, on oxygen 24/7.
I don’t know if you would say I was on a partial MP or not But I do know the antibiotics work. I do take breathing treatment twice a day. I called my doctor on yesterday to ask him to research to make sure I am one the right antibiotics to kill the TH1pathogens.
Amy thank you, thank you so much for your information. I will share this wed site with the persons in my support group. I live in Slidell,Louisiana.
I am a Katrina survior. Having being afflicted with sarcoid, It made my recovery worse. I was in a trailor , over a year. Oh wait thats another story.
Let not let Berni Mac death be in vain.
Cheryl Gardner/
AM I THE FIRST DOMINICAN WITH THIS MESSED UP DISEASE SARCOIDOSIS?
I WAS DX’D IN MARCH 2008.
HOW DID I GET THIS I BEEN HEALTHY ALL MY LIFE I,M 44 YEARS OLD?
WILL THIS KILL ME LIKE MR MAC.?
MY PULMONOLOGIS TOLD ME MY BREATHING TEST CAME BACK EXELLENCE.
BUT READING ABOUT THIS SARCOIDOSIS THE MORE I’M WORRIED THE THE LORD IS CALLING FOR ME.
I THINK THERE IS NO CURE AND THERE WILL NEVER BE ONE.
BUT I’M WILLING TO TRY ANYTHING AS LONG AS IT DELAY THAT CALL. THANKS.
Hi Cheryl,
I notice that many of the antibiotics you mention are not MP antibiotics. Not all antibiotics are created alike. See my piece, Getting it right: How to correctly target L-form and biofilm bacteria. Also, you should know that the MP uses a Vitamin D Receptor agonist called Benicar. Dr. Marshall has shown that Benicar activates the innate immune system. If you want to get well you’re going to need both the MP antibiotics and Benicar. There are a lot of links in this thread to find out how you can learn more about the MP. I strongly suggest you do so.
Hi Jose,
Sarcoidosis, like all inflammatory diseases, is infectious and progressive. Even though it may seem that way, it doesn’t happen overnight. In other words you were definitely infected long before March 2008. Even though your doctors may be unworried about this disease, given your recent breathing test, you should be. Sarc does not just go away.
I think I’m going hoarse saying this: no matter what your doctors or the newspapers say, there is a cure for sarcoidosis, and it’s validated by molecular evidence! My advice to you is similar to what I’ve told everyone else here with sarc: you need to educate yourself and do what it takes to get on the Marshall Protocol. You can get better. It just requires you to take the initiative.
Best,
Amy
hello thanks for your reply.
got one more question.
how do you get infected with sarcoidos?
my doctor ask me if I have travel to the southwest of the u.s.a or if I had a pigeon coo.
can you help if you can, also I will be looking into the mp as I’m reading more about it and becoming more educated on how it might help me. thanks.
Hi Jose,
The chronic bacterial forms that cause sarcoidosis can be found in numerous places in our environment. They can survive in foods and water, be passed from person to person through injectable medicines, and passed in the sperm and the egg. They are not killed by standard purification procedures so they can be present in the blood used for blood transfusions or in vaccines.
But most importantly, like any other bacteria, they are simply spread by people in close contact. If you take a look at any study or sarcoidosis including our own phase II study, you will see that people essentially everywhere in the world (and definitely in every region of the US) have the disease. So I have absolutely no idea why your doctor would think that going to the southwest of being exposed to pigeons would have affected the development of your disease! I’ve never heard anything like that before….
Definitely continue to read as much as you can about the MP on this site and on the study site itself -www.marshallprotocol.com- where there are FAQs and simple explanations of the treatment.
Also, don’t forget that if you have questions about the MP you can ask them free of change at the following website:
http://www.curemyth1.org.
It sounds like your doctor does not have a complete understanding of sarcoidosis so you may have to find a new one who does and who is willing to put you on the MP.
Good luck!
Amy
This is an interesting article Amy…one that I am going to read (in depth) several times again. Bernie Mac’s death really bothers me, just as the death of Reggie White did before him. The fact that the medical community is STILL so mis-informed about this disease amazes and saddens me tremendously. After being diagnosed in the late 80’s, I’ve been constantly told other health issues I’ve had to deal with, were totally unrelated to that diagnosis as well. It’s frustrating (to say the least) to know that your concerns and issues are not (and probably will not) be truly heard. I’ve been aware of the Marshall Protocol for sometime now (joined the site as a member), but (thus far), have not been able to convince doctors I’ve seen to look at it’s findings.
David,
It’s good that you’re getting your doctor involved, but it’s important you educate yourself and become an effective advocate for the MP. Personally, I would be reluctant to merely “leave things up to my doctor.” For more on this, see the comment just above yours.
Best,
Amy
Thanks for your comment, Moble. Sometimes finding an MP doctor is difficult, but it’s certainly not impossible. With many doctors, you really have to make a case for yourself.
I have two pieces of advice:
1. Have you contacted people on the MP in your area? Consider private messaging some of them. Find out who their doctors are and if they might be willing to take on a new patient.
2. Figure out exactly what is holding your would be doctor back from prescribing this important therapy. Come to your doctor’s office prepared with at least the abstracts of studies which rebut many of the most common misconceptions. Read my piece Top 14 misconceptions about the MP.
Good luck!
Best,
Amy
Amy I’m stage 4 in my lungs and I have lymph node involvement as well. I have good day and bad days. I spoke with my doc he said he would look into it for me.
Amy-
The “Marshall Protocol” is not recoginized by the leading reasearchers in the cause and treatment of sarcoidosis. Dr. OM Sharma (USC), recognized as the leader in this field, Dr. Robert Baughman (U of Cincinatti), and Dr. Marc Judson (U South Carolina) are all leading, legitimate researchers that offer the latest cutting edge advice and treatment for this disease. The Marshall Protocol, for whatever reason, is fronted by mostly women, most of whom are not Doctors. This protocol gives off an almost cult-like vibe in it’s approach and determination that “Marshall’s Way” is the only way. As a man with Sarcoidosis (severe skin lesions), I can tell you from first hand experience, that this protocol of antibiotics and benicar did not work for me. Many treatments can help, some don’t, and at times remission will occur without treatment. Think about it. If 500 Doctors say one thing, and one Ph.D says another, which group holds the most creedence? Yes, some people seem to be helped by the Marshall Protocol, but why? Since there are no standard double blind testing done with this protocol, how can one be sure what is causing the so called cure? I would like nothing better than to have this “Marshall Protocol” be the answer, but I can tell you that it did not work for me, and also for many other people. For treatment, stick with Doctors that are the recognized leaders in this field. Hopefully, there will be a cure someday soon for Sarcoidosis, but for now, there is no one answer, no matter how hard the “Marshall Protocol” disciples preach the antibiotic cure.
Hi Mark,
I won’t mince words. I believe your doctor is wrong. So are Drs. Sharma, Judson, and Baugham. That is no less true for anyone else who suggests that sarcoidosis ought to be treated with immunosuppressive drugs. Sorry, but science is not to be conducted by poll.
The problem with a patient such as yourself is that your uncritical eye gives a free pass to this whole crew of mutually anointed experts. You want evidence for the Marshall Protocol? Towards that end, there’s lots on this site, but how about evidence that any immunosuppressive therapy works? The most ambitious study to date, the 2003 NiH ACCESS study, showed that patients being treated for sarcoidosis do not recover using the first-line treatment.
You talk about “cutting edge advice and treatment” for sarcoidosis. If you are referring to any kind of new immunosuppressant, that is anything but cutting edge. Those who subscribe to the autoimmune disease model of sarcoidosis have had some 30-40 years to prove that immunosuppressive medications work against sarcoidosis, and they have consistently and inevitably failed to demonstrate success in the literature. And who knows what negative papers haven’t seen the light of day? That group’s absence of evidence speaks volumes.
If Marshall is right, why don’t the experts concede his points? For one, there’s evidently a certain amount of groupthink at work. In the end though, I think the answer boils down to self-interest. Sharma and the rest of the Old Guard are locked into their disease model. Their careers, their livelihoods, and the respect they are accorded all depend on a bankrupt pathology of (and consistently ineffective treatment for) sarcoidosis, and they won’t give it up easily. I know for a fact that many of the most well-credentialed critics of the MP have difficulty successfully articulating even the most basic elements of Marshall’s proposed pathology and treatment. Many have heard about it, and for them that is apparently enough.
That’s too bad because our understanding of medicine will evolve with or without the sarcoidosis experts… and with or without the patients snookered by them. Incorrect theories - even those repeated and promoted by those widely assumed to be experts - have a way of falling out of favor. Note the professional trajectory of one Dr. Barry Marshall, who was also called a quack and derided by the experts.
One final thought: I take issue with your comment “the Marshall Protocol did not work for me.” What exactly do you mean by that? Did you have a progress report on the site? Did you experience immunopathology? Did you ask the nurse moderators for help?
Amy
Amy-
Thank you for your response and predictable stance. You come across respectable and knowledgeable on your position, but you must admit, the “Marshall Protocol” does not work for everybody. We can debate back and forth all day long but it still won’t cure this disease. If Trevor Marshall had found a cure for Cancer, the leading reseachers of today would welcome it with open arms. The “old guard” sarcoidosis specialist do favor the new TNF-a inhibitors (Remicade, Enbrel, Humira, etc.). I agree that this approach will not cure, only keep the disease from destroying every organ in your body, and then, only for some people, not for everybody. Also, this therapy has some nasty side effects, so it is generally reserved for the most severe cases. I guess sometimes you need to choose between the better of the two evils. I wish more than anybody that the MP would be the answer to this disease. My body is riddled with hundreds of skin lesions and plaques. I would make an amazing poster boy for your cause. If you think your protocol can cure me, you may pass my email to Trevor Marshall. We can take before and after photos of my “hundreds” of skin lesions so when I’m clear, all of the “old guard” specialists, and the world, will take notice. However, until Trevor Marshall achieves peer approval and cooperation, his protocol will continue to be seen as unsubstantiated and insignificant. By the way, antibiotics have been used for years (even before the Marshall Protocol) with mixed results. In order for a “cure” to be achieved, it has to work for everyone, including me. Thanks for allowing me to post my position without censoring. You are less “attack dog like” than some of your MP counterparts, that’s refreshing and serves your cause well. Thanks, again.
Hi Mark,
I do make an effort to be as civil as I can. You know, maybe people are short with you because you appear not to get it. You say: “Antibiotics have been used for years (even before the Marshall Protocol) with mixed results.” I agree with your comment on its face. There are at least a couple patients who succeeded on the MP after first failing on treatments using antibiotics alone. Ival Meyer is one.
One difference - and I can’t overstate how important this is - is that the MP uses olmesartan (trade name Benicar in the U.S.) to activate the vitamin D receptor. I’ll spare you discussion of the bacterial ligands and the rest of the molecular science. (If you’re interested, have a look at my 85-minute video overview of the MP, which covers the science in greater depth.) Suffice it to say, without olmesartan, there is no MP. To even imply that the MP is in the same class with traditional antibiotics treatments, well, that’s just wrong. I should further note that the MP uses pulsed low-dose antibiotics, which target biofilm much more effectively than higher steady doses. High doses can actually be immunosuppressive.
Based on your comment, I doubt very much that you were on the treatment.
Amy
p.s. You’re playing a dangerous game waiting for your doctor to “get it.”
Hi again Amy-
Thank you for the additional information provided by your video overview. Actually, I was taking Benicar every 8 hours coupled with 250mg of minocycline every other day. No herx, or what you now call “immunopathology” whatsoever. I stayed on this course for a good two month’s with the assistance of my GP, who actually agreed to let me try the MP. No improvement with my skin lesions; actually, I gained a few more. I couldn’t understand why it seemed that most people on the MP went through this Herxheimer reaction on very low dose minocycline but I did not. If you have an explaination for this I would be interested in hearing it. Oh, and yes, I stayed out of the sun and avoided foods high in vitamin D as well. Hopefully, this sheds a little more light on my skepticism with the Marshall Protocol.
Mark,
My sister had Stage III breast cancer and entered clinical trials funded by drug companies at MD Anderson. She had a 10% chance of surviving 5 years. That was 9 years ago. It turned out the drug that she tried as an experiment, tomaxifin, has been huge in the treatment of cancer. Some women did not make it, but the overall rate of survival was much greater. Does it mean that because some people did not survive that the treatment is not valid?
What do you think of the problem of sarcoidosis not being funded because it is such a “rare” and not politically popular to fund? How will there ever be any research on this disease unless people like T. Marshall and others who had the disease and the ability to do the research, volunteer their time and act as subjects for the study? Are you really going to wait until some university gets government or drug money funding before you try a treatment with some science behind it?
Was 2 months really a trial?
Why did you take 250 mg every other day? I understood that for the minocycline to be pulsated. Wouldn’t taking 250 mg instead of the 100 mg max defeat this? Why didn’t you go to Phase II if the minocycline was not producing herx?
I am just curious because I am starting the MP next week. If there is more to your story, please share.
Hi Stage 1-
I am not a Medical Doctor, or a Research Biochemist, I can only share my experiences on the MP and how they affected me. I also don’t believe you need to wait to try an experimental drug or therapy, I didn’t wait. I do however believe it is important to (eventually) get peer support for any type of new therapy, especially one that has been around for as long as the “Marshall Protocol”. People in desperate medical situations will try and do just about anything to get better (me included). Stevie Wonders lyric “When you believe in things you don’t understand then you suffer” comes to mind. That is why it is important that today’s leaders in this field (Drs Sharma, Judson, and Baughman) at least ONE of them, look at the Marshall Protocol and say, yes, this makes sense, or let’s do a study, or what do we have to lose by trying this therapy? Let’s get some peer recognition, any peer recognition, by one of these leading specialists. I don’t believe they are all egoists and self serving people, especially Dr. Baughman. Stage 1, you have the right to try the MP, and I’m not saying you shouldn’t. The last thing I wanted to read when I was on the MP was how it didn’t work. There are people out there that will tell you it didn’t work for them as well, but they were pretty much banished from Trevor Marshall’s site. So, here we are. Good luck to you with the protocol, and I hope it works for you. Just keep an open mind either way. Lastly, if a MP moderator/nurse/etc. can show me how I went wrong on this protocol, I’m open to try again with documentation. My skin lesions are plastered all over my body and would be very easy to see if they were to vanish under therapy.
Hi Mark,
As stage 1 pointed out, it’s quite obvious where you went wrong on the MP. You didn’t correctly follow the phase 1 guidelines. I know that when the MP moderators (and I) keep repeating “You can’t alter the guidelines, you can’t alter the guidelines” it might come off as annoying and you might think we are just being difficult.
But, honestly, we stress that point so much because even minor changes to the MP - such as your decision to take 250 mg of minocycline every day when the MP minocycline limit is 100mg every day - is a huge problem, and one that definitely caused you not to herx.
I realize it’s easy to assume that if low-dose antibiotics can do the trick than a higher dose might work better but that is absolutely not the case when it comes to the MP! At a dose like 250 mg, minocycline does not just fail to weaken bacteria, it also has negative, inhibitory effects on the immune system. Essentially, it slows phagocyte production (phagocytes are the white blood cells that are supposed to be killing the bacteria making you ill). So a 250 mg dose will slow your immune system to the point where it counteracts the effects of Benicar.
You can see peer reviewed evidence for this phenomenon in the section on low, pulsed dosing in this article:
http://bacteriality.com/2007/10/11/antibiotics/
I also strongly recommend you take a look at the peer reviewed literature at the end of this article which describe how high dose antibiotics (anything over 100 mg) can simply not target biofilm bacteria effectively.
http://bacteriality.com/2008/05/26/biofilm/
A 250 mg dose also does not let the concentration of the antibiotic sink to the point at which is can effectively bind to bacterial ribosomes. You may also want to read this article which describes why it’s so important to follow the MP guidelines as written:
http://bacteriality.com/2008/02/23/misconceptions/#9
Also, Stage 1 is right with the comment that before condemning the MP you need to try out the treatment for longer than two months. It takes the body a while to acclimate to Benicar and for the Benicar blockade to fully form. Some people who have less herx at the beginning of the MP very often find that the herx picks up dramatically after several more months. As Stage 1 also pointed out, if, after deciding to take the correct doses of minocycline you still didn’t herx, the next step would have been to potentiate the antibiotic ribosome blockade by adding in a phase II/III antibiotic, rather than just dropping the treatment and calling it a failure.
I highly recommend that you pick up a copy of the MP phase 1 guidelines and this time take the antibiotics as directed. I strongly feel you will herx under such conditions and hopefully realize that you can treat your disease with the MP. Even if you don’t become a huge fan of the MP because it sounds like you had run-ins with the board staff, I at least hope you try taking the correct doses of minocycline so that you can recover.
Getting someone like Om Sharma to approve of the MP is not one of Autoimmunity Foundation’s main goals. The Foundation much prefers to work with open-minded doctors and researchers who actually take a good look at the MP science and can help push it forward.
Marshall is also focused on sticking to the science behind the MP and speaking about it at as many prestigious peer-reviewed conferences as possible. For example he will be chairing the entire session on Vitamin D at the upcoming Congress on Autoimmunity in Portugal. By doing so, he is showing that Sharma and the other “experts” are wrong. But to try to “bring Sharma over to our side” when he and the other “experts” are so bullish about their own dogma is a waste of time and energy.
Also, the reason a double-blind placebo controlled study has not yet been done on the MP has nothing to do with Sharma and other “experts.” ARF considers such a trial unethical. Read more about why here:
http://bacteriality.com/2008/02/23/misconceptions/#7
Best,
Amy
Mark and Amy, I’m enjoying this thread very much. (although perhaps enjoying is inappropriate in this context!) I don’t mean to make light of the event that inspired Amy’s entry, nor of the plight that so many of us find ourselves in. Full disclosure- I have pulmonary sarc; stage III possibly IV. I’m 40 years old. I take this very seriously (while trying to maintain a healthy sense of humor as well!).
I enjoy Amy’s writing and much of the content on this site, while remaining somewhat skeptical of the MP. I feel that skepticism is healthy and necessary, considering some of the statements made by MP supporters. For example, somebody (I thought it was Amy herself, but I may be incorrect; I’m honestly not certain) made a couple of doozies recently.. this individual is suffering from brain fog due to runaway bacteria…that individual is obese- you guessed it- due to runaway bacteria. Hang out in the MP camp long enough and perhaps you too will come to believe that pretty much every physical ill known to man can be alleviated with the MP.
I hope the dialogue here will continue; I think it too is healthy and necessary. When one ’side’ tries to silence the other, it only succeeds in making the silencer suspect. I’m posting again to this thread because two things have come to mind that I want to put out here in the hopes they will do some good, or at least keep things lively (lively in the positive sense I hope).
First, Mark I have to concur with what Amy and other(s) have mentioned: do you really feel you gave the MP adequate time to judge it? And what about the view that you weren’t even following the process correctly (dosage and such)? How do you answer that? Somebody suffering such as yourself, and willing to start down the MP path- you must surely want to give it its due, to make certain before you dismiss it. And I love your idea about the ‘before and after’. In fact, I was going to ask Amy if on any of the MP sites anywhere, are there similar x-ray films, ACE score info, something, anything where people can see the results. Not just assurance from the protocol’s creator, but actual, verifiable stats. And still, the problem with that scenario is that one must assume all of this information would be produced by the creator, and the already-converted.
Second, are any of you (especially you Amy) familiar with Wonder Drake, and assistant professor of medicine at Vanderbilt? It would seem Ms. Drake is devoting much of her research career to determining a mycobacteria cause in Sarcoidosis. I have considered emailing Ms. Drake to inquire about her thoughts about the MP, but have yet to do so. More info here: http://www.rwjf.org/reports/npreports/amfdpdrake.htm
I find the work Ms. Drake is doing particularly interesting because there are those that seem to believe that nobody within the ‘real, respectable’ medical community believes there is a bacterial agent involved in sarc (I hope I’m saying that correctly). In fact, my pulm at the University of Michigan is one who dismisses the idea, claiming that research done at their facility was unable to find any such presence in the granulomas.
That’s all for now. Thanks again!
Hi Nigel,
Yes, I approve both the positive and negative comments written on this site. I have made a few exceptions. In one case I didn’t put up a post that took information from a very private MP forum (someone talking personally about their symptoms) as I didn’t feel it was ethical. Also, I didn’t approve Mark’s last comment yesterday which essentially included only a link to a site containing pure libel about Dr. Marshall and some of his experiences as the CEO of a company from a while back. I think the site is absolutely irrelevant to the discussion at hand in which I am trying to focus on science related to chronic disease.
In any case, I’ve never said anything about runaway bacteria as runaway bacteria do not exist. Perhaps a person on the MP was discussing a “runaway herx.” If someone on the MP has a very high bacterial load and they take too many low dose antibiotics at once, it’s possible that they may start to kill so many bacteria that their die-off reaction becomes very strong and constant. Because the symptoms are so constant, some people comment that their herx or die-off seems to have “run away.” Such a pattern of herx is rare and usually occurs when people are not careful about their antibiotic dosing. Of course, since the “runaway” herx is killing bacteria, it is driving forward the process of recovery, but it’s a certainly not a favorable way to get there!
However it is true that MP patients do kill chronic intraphagocytic metagenomic bacteria in the head and gut. You may be interested in this article about bacteria and obesity.
http://bacteriality.com/2007/08/09/obesity/
When acute bacterial forms cause such a wide array of different illnesses that impact all areas of the body, I’m not sure why anyone would find it hard to believe that the chronic forms of these pathogens and other biofilm-like forms are also capable of causing a wide variety of chronic diseases.
Yes, MP sarcoidosis patients have reported ACE levels returning back into range and the absence of granulomas in their private progress reports on the MP site. The results are hard to fake as I’m not sure how someone could alter the results of such tests. Such data has been recently collected and will be discussed in greater detail by Tom Perez of the FDA at the upcoming Congress on Autoimmunity in Portugal.
Until your post, I had not heard of Dr. Wonder Drake. Thank you very much for letting me know about her work. I will definitely give her a call in the coming days. My guess is that she probably hasn’t yet studied the MP science closely enough to make a statement regarding it’s efficacy, but who knows?
Best,
Amy
Hi Amy,
I think one way to avoid potential friction would be to write articles where you state ‘we believe’ than using language which states something universally accepted.
I well understand the enthusiasm of those on the Marshall Protocol, particularly those satisfied with their progress, however the Marshall Protocol is but one option for the illnesses you mention. It is no doubt going to seem offensive when you rubbish alternative theories unconstructively. Science advances when you also challenge your own ideas.
Also attacks on the MP have to be taken on the chin until there is a peer reviewed study, you have to accept the gold standard of acceptance is a study in PubMed. Fight your corner well and if you’re right you can be happy that you told us so eventually. That said, I wish those undertaking the MP well.
Hi Aziz,
I take your point. I don’t know how faithfully you read this blog, but I have tempered my tone in the more recent pieces I’ve written. I do aspire to get my more skeptical readers to embrace what certain researchers would term the “alternate hypothesis.”
That said… rates of chronic disease are at epidemic proportions. We simply can’t wait for every last researcher to concede that diseases of unknown cause are not genetic diseases but infections or that chronic diseases are not caused by vitamin D deficiency. But, of course, that’s what so much of the peer-reviewed literature tells us. What gives?
For one, journals don’t have a great track record for recognizing revolutionary ideas.
Also, it doesn’t occur to us just how subject to prevailing biases some current research can be. Take a look at Stephen Strauss’s thoughtful critique of a *peer-reviewed* study arguing that vitamin D deficiency causes chronic disease. The holes and faulty premises are there. One need only look for them.
JP Ioannidis does Strauss one better, making a broader case in his provocatively titled essay, “Why most published research findings are false.” In this peer-reviewed paper, Ioannidis writes, “It can be proven that most claimed research findings are false.” He goes on, “There is increasing concern that in modern research, false findings may be the majority or even the vast majority of published research claims.”
No one working with or for Autoimmunity Research Foundation scorns publication in peer-review publication. (I assume you saw Marshall’s BioEssay?) There’s every indication that in the coming months and years we’ll have more and more papers to support our case to even the most skeptical among you.
In the meantime, I humbly submit that sufficient evidence is there. It just requires a modicum of critical thinking.
Best,
Amy
Sorry Amy, you have blinders on. You will never become a critical thinker without skepticism.
Hi Mark,
With all due respect, I don’t think you know me at all. Certainly don’t well enough to tell me how I approach scientific findings and literature.
Just as you condemned the MP without truly giving it a chance, your negative remarks about me have no real substance.
You seem very angry and I understand how living with sarcoidosis can lead to that anger. But please don’t direct it at me. I tried to answer your questions as best I can and there’s nothing more I can do.
Kindly,
Amy
I asked my family practice physician, my pulmonologist, and my surgeon, “Can Benicar and low dose antibiotics minocyline (and the other ABX) HURT me? They all said no, that they could not. When I told my Integrated Medicine Dr I had sarcoidosis–he brought up the MP before I could. He has treated two people with Th1 disease with the MP and he has had very good results. What would be in it for him to say so, if it were no so? He could still charge office visits to do “watchful waiting” with me, or throw some supplements or steroids at me. Instead, he said to try the protocol.
Based on what I read in the MP websites, this website, and many more recent studies implicating bacteria in sarcoidosis, I decided not to wait until a double blind study is developed—which may never happen due to the lack of interest in a “rare” disease and the lack of interest in pharmaceuticals that want to promote new drugs. By the time this happens it could be too late for me, that is if it ever happens.
My husband was diagnosed with sarcoidosis 25 years ago. The ACCESS report says that spouses have a 1000X higher chance of being diagnosed with sarcoidosis, showing more than a casual connection as a communicable disease. Health care workers (which we both were) have a 5 times higher change of this diagnosis. I have dipped my fingers into some pretty nasty secretions (pre-AIDS precautions.) Who knows what bugs my husband and I have swapped around?
I am not going to sit back and watch my health fall apart when there is something positive I can do, which can not hurt me and that can reign this disease under control (as it has done for others.) I can certainly understand why the people at the MP, many who are effected by saroidosis, did not wait until magic money falls from the sky to do a double blind study. They saved themselves and are willing to share that information AT NO COST. The AT NO COST should be a huge sign that this is not a scam and the personal sacrifice they have obviously made should say something about their intentions. I don’t need to wait for some university to prove them right or wrong. I started my Benicar yesterday.
Here are some interesting articles I found over the last few weeks and they discuss bacteria’s role in the etiology of sarcoidosis (and they are not affiliated with the MP):
Read on…
http://www.emedicine.com/DERM/topic381.htm
Proposed antigens fall into 3 categories that include infectious, environmental, and autoantigens. The most common infectious agents implicated are Mycobacterium tuberculosis, Mycoplasma species, Corynebacteria species, spirochetes, atypical mycobacteria, Propionibacterium acnes, Borrelia burgdorferi, herpes simplex virus, hepatitis C virus, Epstein-Barr virus, cytomegalovirus, coxsackievirus, rubella virus, Histoplasma species, Cryptococcus species, coccidioidomycosis, and sporotrichosis. Environmental antigens implicated include metals (eg, zirconium, aluminum, beryllium), organic dusts (eg, pine, pollen), and inorganic dusts (eg, clay, soil, talc). Heat shock protein has also been implicated.
————————-
http://www.medscape.com/viewarticle/444544_4
We found evidence of mycobacterial DNA in the granulomas of 24% of sarcoidosis specimens when assessing for rpoB, 48% in the same population when assessing for 16S rRNA; in total, 60% were positive for either.
The presence of M. tuberculosis DNA in 48% of sarcoidosis specimens is notable because clear clinical connections between sarcoidosis and tuberculosis have been made.
——————————-
Dr. Wonder Drake:
http://www.mc.vanderbilt.edu/reporter/index.html?ID=4809
One of the Vanderbilt studies involves assessing for the presence of microbial nucleic acids in tissue samples from patients with sarcoidosis, investigating for the presence of mycobacteria, similar to that in tuberculosis.
“Our molecular work suggests that an organism genetically similar to, yet distinct from, Mycobacterium tuberculosis, is present within the sarcoidosis granulomas. It’s something genetically close to TB, but not TB,” Drake said.
http://www.mc.vanderbilt.edu/reporter/index.html?ID=4809
————————–
Molecular evidence for the role of mycobacteria in sarcoidosis: a meta-analysis
http://erj.ersjournals.com/cgi/content/abstract/30/3/508
From Mycobacteria to Sarcoidosis –
Is the Gate Still Open?
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ProduktNr=224278&ArtikelNr=90991&filename=90991.pdf
—————-
http://www.ncbi.nlm.nih.gov/pubmed/8046828
Bacterial components (MDP and IT27 antigen), demonstrated in sarcoid granulomas, strongly suggest the causative agent of sarcoidosis to be derived from some bacteria but many kinds of bacteria are known to have these bacterial components.
Thank you for allowing this open discussion, Amy.
Hi Amy,
A very timely article. I think Bernie Mac was in denial and had total faith in his doctors. With a career on the boil, who can really blame him. Prednisone would have been his only hope of maintaining any semblance of normality. Sure, prednisone improves pain, improves mobility, appetite, mood etc but at what cost?? I have had diagnosed sarcoidosis for nine years. I have been on prednisone and it is wonderful for the relief it gives to unrelenting pain caused by the disease. However, I got the shock of my life when my immunologist did my immunoglobulin levels. IgG, IgA, IgM etc were all down to almost nothing. He told me if they didn’t improve in the next six months I would have to go into hospital to have a transfusion of immunogloblins (which is a procedure not without risk itself). Prednisone and other immunosuppressants certainly leave a patient open to opportunistic and commensal infection. My Dad caught Hep C from a blood transfusion which he needed because he had lymphoma. I am glad the doctor wrote Lymphoma on his death certificate and not Hep C, because if he hadn’t had the lymphoma, he would never have caught Hep C. The same is true of Mac. If he hadn’t have had sarcoid he would never have died of pneumonia.
There’s a great article about how many people with sarcoid have been affected by pneumonia in the Chicago Tribune. I have had pneumonia, pleurisy and bronchitis only since I have had sarcoidosis. I was never chesty, even as a child.
As to the disease being a two year thing and you’re cured, I too was sold this pup by my chest doctor. I have had two proven recurrences of the illness since the two year