True to form, Dr. John Cannell has published yet another wonderfully insightful Vitamin D Newsletter.
One item caught my eye, a response to a question about the Marshall Protocol. I, like Dr. Cannell, was inundated with questions about this so-called protocol, which amounts to little more than the unfounded speculations of a non-physician, actually someone not even involved in health care.
In all honesty, I blew the whole issue off after I read Dr. Marshall's rants. They smack of pure quackery, though from somebody who clearly has a command of scientific lingo. To Dr. Cannell's credit, he took the time and effort to construct a rational response in the latest issue of the newsletter. I reproduce his response here:
Dear Dr. Cannell:
I understand Dr. Marshall conducted a study and found vitamin D is bad for you. What kind of study did he do?
Mary, Minneapolis, Minnesota
Dear Mary:
I have been inundated with letters asking about Professor Marshall's recent "discovery." Some have written that to say they have stopped their vitamin D and are going to avoid the sun in order to begin the "Marshall protocol." The immediate cause of this angst is two publications, a press article in Science Daily about Professor Marshall's "study" (which is no study but simply an opinion) in BioEssays. Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist.
In reading his two articles, Dr. Marshall's main hypotheses are simple. (1) Vitamin D from sunlight is different than vitamin D from supplements. (2) Vitamin D is immunosuppressive and the low blood levels of vitamin D found in many chronic diseases are the result of the disease and not the cause. (3) Taking vitamin D will harm you, that is, vitamin D will make many diseases worse, not better. If you read his blog, you discover that the essence of the Marshall protocol is: "An angiotensin II receptor blocker medication, Benicar, is taken, and sunlight, bright lights and foods and supplements with vitamin D are diligently avoided. This enables the body's immune system, with the help of small doses of antibiotics, to destroy the intracellular bacteria. It can take approximately one to three years to destroy all the bacteria." That is, Dr. Marshall has his "patients" become very vitamin D deficient.
Again, Dr. Marshall conducted no experiment and published no study. He wrote an essay. He presented no evidence for his first hypothesis (sunlight's vitamin D is different than supplements). From all that we know, cholecalciferol is cholecalciferol, regardless if it is made in the skin or put in the mouth. His second hypothesis is certainly possible and that is why all scientists who do association studies warn readers that they don't know what is causing what. Certainly, when low levels of vitamin D are found in certain disease states, it is possible that the low levels are the result, and not the cause, of the disease. Take patients with severe dementia bedridden in a nursing home. At least some of their low 25(OH)D levels are likely the result of confinement and lack of outdoor activity. However, did dementia cause the low vitamin D levels or did low 25 (OH)D contribute to the dementia? One way to look at that question is to look at early dementia, before the patient is placed in a nursing home. On the first day an older patient walks into a neurology clinic, before being confined to a nursing home, what is the relationship between vitamin D levels and dementia? The answer is clear, the lower your 25(OH)D levels the worse your cognition.
Wilkins CH, Sheline YI, Roe CM, Birge SJ, Morris JC. Vitamin D deficiency is associated with low mood and worse cognitive performance in older adults. Am J Geriatr Psychiatry. 2006 Dec;14(12):1032-40.
Przybelski RJ, Binkley NC. Is vitamin D important for preserving cognition? A positive correlation of serum 25-hydroxyvitamin D concentration with cognitive function. Arch Biochem Biophys. 2007 Apr 15;460(2):202-5. Epub 2007 Jan 8.
These studies suggest that the low 25(OH)D levels are contributing to the dementia but do not prove it. Only a randomized controlled trial will definitively answer the question, a trial that has not been done. So you will have to decide if vitamin D is good for your brain or not. Dr. Marshall seems to be saying demented patients should lower their 25(OH)D levels. Keep in mind, an entire chapter in Feldman's textbook is devoted to the ill effects low vitamin D levels have on brain function.
Brachet P, et al. Vitamin D, a neuroactive hormone: from brain development to pathological disorders. In Feldman D., Pike JW, Glorieux FH, eds. Vitamin D. San Diego : Elsevier, 2005.
It is true that in some diseases, high doses of vitamin D may be harmful. For example, in the early part of last century, the AMA specifically excluded pulmonary TB from the list of TB infections that ultraviolet light helps. They did so because many of the early pioneers of solariums reported that acutely high doses of sunlight caused some patients with severe pulmonary TB to bleed to death. Thus, these pioneers developed very conservative sun exposure regimes for pulmonary TB patients in which small areas of the skin were progressively exposed to longer and longer periods of sunlight. Using this method, sunlight helped pulmonary TB, often to the point of a cure. Furthermore, it is well known that sunlight can cause high blood calcium in patients with sarcoidosis. In fact, sarcoidosis is one of several granulomatous diseases with vitamin D hypersensitivity where the body loses its ability to regulate activated vitamin D production, causing hypercalcemia.
Cronin CC, et al. Precipitation of hypercalcaemia in sarcoidosis by foreign sun holidays: report of four cases. Postgrad Med J. 1990 Apr;66(774):307-9.
Furthermore, although medical science is not yet convinced, some common autoimmune diseases may have an infectious etiology. I recently spoke at length with a rheumatologist who suffers from swollen and painful joints whenever he sunbathes or takes high doses of vitamin D. As long as he limits his vitamin D input his joints are better. To the extent vitamin D upregulates naturally occurring antibiotics of innate immunity, sunlight or vitamin D supplements may cause the battlefield (the joints) to become hot spots. I know of no evidence this is the case but it is certainly possible.
However, If Dr. Marshall's principal hypothesis is correct, that low vitamin D levels are the result of disease, then he is saying that cancer causes low vitamin D levels, not the other way around. The problem is that Professor Joanne Lappe directly disproved that theory in a randomized controlled trial when she found that baseline vitamin D levels were strong and independent predictors of who would get cancer in the future. The lower your levels, the higher the risk. Furthermore, increasing baseline levels from 31 to 38 ng/ml reduced incident cancers by more than 60% over a four year period. Therefore, advising patients to become vitamin D deficient, as the Marshall protocol clearly does, will cause some patients to die from cancer.
Lappe JM, Travers-Gustafson D, Davies KM, Recker RR, Heaney RP. Vitamin D and calcium supplementation reduces cancer risk: results of a randomized trial. Am J Clin Nutr. 2007 Jun;85(6):1586-91.
I will not write again about Dr. Marshall's theories. No one in the vitamin D field takes him seriously. Personally, I admire anyone willing to swim against the tide and raise alternative theories. I have done the same with influenza and autism. However, I agree with the New York Times, An Oldie Vies for Nutrient of the Decade and Jane Brody's conclusion, "In the end, you will have to decide for yourself how much of this vital nutrient to consume each and every day and how to obtain it." I agree. You will have to decide for yourself.
John Cannell, MD
The Vitamin D Council
Sunday, March 30, 2008
The Marshall Protocol and other fairy tales
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63 comments:
I think "theory" is far too considerate a word for Mr. Marshall's speculation around Vitamin D. He observed that there was a single condition that was exacerbated by 25(OH)D (sarcoidosis, where macrophages overproduce highly active 1,25(OH)2D from the less active 25(OH)D), and speculated that most (all?) diseases have the issue of overproduction of active Vitamin D as an underlying etiology.
If that perverse chain of logic doesn't max out your quackery meter, little will.
There are a very few conditions that Vitamin D will make worse (almost all were described in the excellent post above). For just about everything else, higher levels of 25(OH)D (50-90ng/ml) will either be neutral or beneficial.
Is itchy skin a side-effect of large dose vitamin D? I'm taking betweem 2 and 4 grams per day, with fish oil. The itchiness reminds me of when I was on doxycycline. On days I forget to take the vit D I notice no itchiness.
I've been on the MP site and read a little about it. The system is almost set up to lead everybody to believe that they have "l-form bacteria" that either does or doesn't cause symptoms. From what I can gather it sounds like he wants your 25(OD)D at 16-20ng/ml or so...and that's where we all should be naturally...uhhh? It's been proven that levels this low are symptomatic (muscle pain, weakness, etc.)...oh wait, that's the bacteria causing those symptoms, silly me. So does Marshall want us all walking around in agony with dangerously low levels? As for 1,25(OH)2D as it relates to 25(OD)D, if you're ratio is 2:1 then you have serious problems. Optimum 25(OD)D levels are about 50ng/ml and optimum 1,25(OD)2D are about 35 or so It's almost made to have everybody believe they have something wrong with them...to me it's irresponsible. Apparently some people have had success, but at what cost?
I'm currently dealing with a D deficiency and have been trying to get better (someday I'll be able to stand in one spot without aching pain...ahh, someday). When I first learned about the MP I freaked out. I thought I was doomed and would need to take months of antibiotics. I feel the MP works off of fear myself.
Mark London has a good article about this here: http://stuff.mit.edu/people/london/universe.htm
To anonymous: I've read certain types of fish oil are less inferior. At the same time isn't 1-4grams of D a bit excessive (unless prescribed)?
Low D = higher PTH, high PTH is a marker for bone loss. The reason why the MP has worked for some people is due to the fact that even mainstream physicians haven't disputed the drugs they use for many illnesses, not the D avoidance. It's my belief that Marshall hasn't tested whether the drugs work, or even work better with a D replete system.
Wow, Mark London's article is exactly what I've been looking for. The MP contradicts itself in every way.
To say that we are supposed to have low levels of Vitamin D naturally is absurd. We're meant to be in the sun. So when we were cave dwellers we were taking in this steroid hormone at unsafe levels all of the time...evolution decided to just let it slide I guess and we survived.
I've actually spoken to somebody on the MP and they were the ones who told me to get my D levels checked. While I'm glad I did (this is how I found out I was deficient) they wanted me to get them checked to see if I fell under the MP's guidelines as having some inflammatory response. From reading London's article it sounds like most of the population falls under the MP's guidelines, so we all must be experiencing chronic inflammation...unbelievably irresponsible.
Thank you for posting this! I've recently been diagnosed with Palindromic Rheumatoid Arthritis, a fairly rare form of RA and on one of the support boards was directed to the Marshall Protocol site. I was amazed! And shocked!!
Marshall's "findings" contradicts everything I've been reading about D and, like another commenter said, just doesn't make sense in looking at how we evolved!
What concerned me about the website was the amount of dangerous information given out! Telling people to avoid going on all forms of steroids, even when having respiratory problems! And the Benicar doses he recommends? Scary! And, like anonymouse 2 said, symptoms are either caused by the bacteria running rampant (not following their protocol) or a "herx" or reaction to the protocol that shows it's working! Sorry, you can't have it both ways!
I do take doxycycline for my PRA, and hope it works. I'm taking it because I figure it's a reasonable and fairly safe way to try and treat this disease. But avoiding the sun and attempting to get your d levels as low as possible just doesn't make sense!
"If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist."
This just cracked me up!!
Gosh, I'm glad I read this! I've just been diagnosed with sarcoid, and had been looking into the MP. I'm glad that I checked the other side!
Rebecca's comment,
I've recently been diagnosed with sarcoidosis. I have granuloma tumor involvement in lungs,heart,kidneys,liver, spleen, lymph nodes, muscle, bone and spine. I am also an Insulin Dependant Diabetic of over 30 years with no complications at this time. The medical profession has made it very clear that they do not understand the etiology of this disease, but that they believe that it is an auto-immune disease, such as, MS, diabetes, lupus and on and on. So they decide to suppress the immune system with things like Methotrexate (chemo) and high dose corticosteroids (Prednisolone). I am also a healthcare professional, I can tell you, we are also trying to figure it out and making alot of mistakes along the way. This treatment plan promises only to slow down the process, but is in no way curative. And by the way, offers a higher degree of mortality for a diabetic by way of kidney failure, and enormously out of control blood sugars.
I really get the science behind the MP, it is really exciting to me. It contradicts the ideas of the vitamin D teachings at this time, which makes this an unpopular choice. With Th1 inflammatory disease, there is an inflammatory cycle that eventually begins to synthesis its own Vit D. And Vitamin D is not a vitamin at all, but a secosteroid. It behaves like a steroid. Too much of this may fight cancer (like chemo does), but is not good for you at high doses. Be careful. I know that I will be careful as I begin the Marshall Protocol. Watch my labs closely. Keep very diligent daily graphs and notes. By the way, this too has its dangers, but not anymore dangerous than what the accepted treatment has to offer me.
Dear Dr. Davis,
I doubt you will even publish this comment, as its the only one here that is critical of your original blog, but at least you will see it, and it is you that it is intended for.
I am a physician myself (so I'm sure that your opinion of me has just sky-rocketed) - I was very disappointed to hear you discredit a researcher for being a non-physician. There are many reasons one could find to discredit a researcher, and this is perhaps the lamest one. Sadly, it smacks of the exact kind of physician snobbery we doctors are so often criticized for. Nice going. What's more, a brief reference to Dr. Marshall's bio revealed that he worked at Sick Children's Hospital in Toronto where he was involved in diabetes research. Thus, your claim that he is "not even" involved in health care, lacks the kind of accuracy one would expect of a physician in your position.
I have read Trevor Marshall's claims, and I have my own questions about them. However, I would not want to be caught calling someone's ideas rants or quackery. That happened with another Dr. Marshall - the one who discovered the causative link between h. pylori and duodenal ulcers. Remember? His colleagues walked out on his presentation; years later, his "rants and quackery" earned him the Nobel Prize.
I read Dr. Cannell's essay on Dr. Marshall, and it was immediately evident that he had not even read the protocol - I could tell this and I have read it only briefly. My understanding is that Dr. Marshall's claim is that 25-D is preferentially converted to 1-25-D in certain disease states. So Dr. Cannell's detailed defense of 25-D rather misses the mark.
I'm not defending Dr. Marshall's claims here; I'm simply critical of your reaction to them. It is, in a word, unscientific. As a cardiologist, I very much doubt that you have to deal with patients suffering from conditions such as chronic fatigue and fibromyalgia. If you did, you would know that there is very little that "the great men of medicine" have to offer them. In fact, the longer I am in medicine, the more frankly embarrassed I am by how little we offer patients with chronic disease.
I intend to remain open-minded to the ideas of others - whether they are "real" doctors or not. Personally, I think science can benefit from the kind of creativity found in other fields, especially in considering approaches to conditions which continue to confound us.
Respectfully,
Dr. J. Rae
Amen to that, Dr. Rae!
I have been on the Marshall Protocol for a couple of years. I am thrilled with the progress that I have made so far and surprised how much of the Marshall Protocol makes sense to me.
I remember reading a post on a health board written by a woman who lived in Florida. She was diagnosed with EBV and was surprised that she had a low vitamin D level. Months later, she posted again and her vitamin D levels had gone up. And guess what? She was feeling better too! So this tells me that:
a) A low vitamin D level is not the cause, but rather a symptoms of the disease.
OR
b) The lab made a mistake with her blood sample.
I believe the reason is A. I remember when my illness took a turn for the worse, I had photophobia. That tells me that I needed to avoid sunlight and it just gave me assurance that I was on the right treatment.
Regards,
SDD
I had the same reaction as Dr. Rae.
I am currently on the MP for a number of reasons. First, the theory proposed by Marshall best explains the confusing array of symptoms I've had over the years over all of the theories I've read about (diagnoses: CFS, Fibro, MCS, mild COPD, ETC.), and second, once after my body seemed to be on a natural immunological tear a number of years ago, I developed my own diet and when the 8-month long immune response finally ended, I felt 15 years younger. My health had improved. (Too bad I didn't get my Vit D tested at the beginning and the end of that. No doubt, the levels would have gone up as I became healthier.) My diet? Almost the exact same diet of the Marshall Protocol. Unfortunately, I allowed myself to be given steroids on a number of ocassions after that improvement (I still had chemical sensitivities so I still had a long way to go to good health, but I had my energy back and almost all of my body pain had stopped), and my illness got worse following the use of steroids and I was eventually disabled. On top of that, I had started consuming eggs in greater number (naturally high in D) and I was once again consuming added D (in foods such as milk).
Now, on the MP I am getting better again. When well, I plan to avoid added D, but consume foods naturally high in D in moderation because I believe that Vit D is probably important. We wouldn't have a VDR if there wasn't some role for Vit D--that seco-steroid--in the body. However, I don't think it has the importance that current research is giving it.
Do I think Marshall is 100% right. No. I don't even think he thinks he has it all (he's too smart to believe that). But I do believe if I reduce my Cell Wall Deficient bacterial load that my body will be better able to handle whatever else might be contributing to my CFS, whether that is EBV, HHV6 (I think that's the abbreviation of one of the suspect viruses), the retro-virus imbedded in the human genome that seems to be associated with CFS and MS, or PIV-5, which I think has the greatest chance of what made a bad CWD condition at my birth worse. (PIV-5 shuts down interferon production, leading to a reduced ability to fight bacteria in the body.)
Indeed, my belief that reducing the CWD will help comes from personal experience. Imagine three small girls all born to mothers (war brides) within a year of receiving military vaccinations in London in order to enter the US. All three get feral kittens from the same litter (likely PIV-5 carriers) as children and go on to develop symptoms shortly thereafter. All three grow up to have CFS/Fibro and one dies from cancer (one of the leading causes of death of folk with CFS). None of their older sibs born overseas or younger sibs born after them are anywhere near as sick when it comes to immune disease. I don't think that is a coincidence. I'd love to see a study of people born to mothers after they've received the sort of shots our mothers received (possible transmission of CWD that either piggy backed on the vaccinations or somehow increased temporarily and was exacerbated during pregnancy when 1,25D naturally elevated before the mothers' immune systems had a chance to handle the invaders). Are we, the kids born after a series of shots like that, sicker than most as adults?
For me, my only hope to achieving any sort of wellness seems to be reduce the CWD load and get my immune system up and running again.
Most of the Vit D research out there is observational and short sighted. The elementary nature of the research is just shocking.
Hogwash is what a lot of the criticism is that is directed at Marshall. (Indeed, a recent study showed that half of what doctors do for their patience is not supported by research--I mean, who is practicing voodoo here?) I'd like to see someone with experience in molecular modeling and medical research do a critque of his work.
Here's a good primer on the science behind the Marshall Protocol: http://bacteriality.com/2008/05/07/mpintro/
"I'd like to see someone with experience in molecular modeling and medical research do a critique of his work."
I can't find any exact links now but I have seen comments from his fellow peers that criticize the fact they're unable to comment on the model due to him not sharing relevant data. Some others have speculated just from distant observation that the data seems erroneous. I would take him seriously if he had a peer reviewed study, not a peer review opinion, but in all the years MP has been going this still hasn't happened. I don't care for anecdotal reports from the MP study site.
Believe what you wish .. I have been ill since 1992 when I was diagnosed with sarcoidosis. I was also diagnosed with Lyme. I had a lung biopsy, and later had heart surgery to correct 2 reentrant AV nodes. That said I went on the Marshall Protocol a little over 6 month ago. I can honestly say that I feel better and that I believe that the MP has helped me. I suffered for many years. My labs have dramatically improved, my mental function has improved as well and while it was not easy in the beginning, I finally have some hope for my future. What gives with the negativity on this blog ? It's obvious to me that few of the posts are informed about the MP. Put simply, before you blow off the MP as a possible treatment, read the posts for yourself from the MANY people like that have been helped at www.marshallprotocol.com.
I am grateful that I found the Marshall Protocol.
Matthew - Brooklyn New York
As a former MP participant, and sarcoidosis sufferer, I can tell you that this protocol didn't work for me, and I have the skin lesion version of the disease.
My biggest objection to Trevor Marshall is his inability to take constructive criticism or questions about his theory.
There have been no standard double-blind studies accomplished or any follow-up initiated on failed participants like myself. If you are not 100% into this protocol, you are not wanted, or needed, as failures don't sell.
The Marshall Protocol proctors are cult-like women that worship this man. It can be quite unsettling when they come at you like attack dogs. This is a very common occurance if you disagree with their opinions. If you question too much, you are banned from the site, try it and see.
Additionally, very few medical community peers support this man. The world renown sarcoidosis specialist, Dr. OM Sharma (USC), doesn't even recognize this protocol; nor do Drs. Marc Judson (U of South Carolina)and Dr. Robert Baughman (U of Cincinnati).
If you have been recently diagnosed with sarcoidosis, stay away from the "Marshall Protocol" unless you're into cults. The three physicians I mentioned above are the best in the country-start there.
P.S. The only cult I like are the "Blue Oyster Cult" they rock, and they won't dammage your health.
Thanks,
Derek
There are 3 distinct problems with the Marshall Protocol:
1. It requires that the patient take an active role in their healthcare. It may even require you to [gasp] disagree with your doctor.
2. It requires discipline. The patient actually has to follow the (quite simple) instructions, to the letter, every day. "Cheating" here only delays the return of your health.
3. It requires patience. It took a long time (probably decades) before you were clinically diagnosable, and it will take several years to recover health. Those who want a quick fix and immediate gratification will have to look elsewhere. Sadly, there's nowhere else to look.
It's because of these three issues that the average person will have problems with the Marshall Protocol. Sadly, they'll often turn around and blame their failure on the treatment, rather than their lack of motivation or discipline.
@ Derek - I'm truly sorry to hear that the MP didn't appear to work for your sarcoid. I however, can attest that it is working very well for mine (cardiac / pulmonary). I am left wondering a) how long you were on the treatment, and b) how diligently you followed the protocol instructions. The instructions aren't difficult, but I know from experience that it requires work and some real commitment to stick with it every single day...taking Benicar every 6 hours, pulsing the antibiotics properly, etc. I'm afraid there are no shortcuts or quick fixes, as James mentions above. I'd encourage you to give it another try.
As to Dr. Marshall taking "constructive criticism" about his theory, unless you are a highly trained molecular genomicist, I truly doubt you have anything genuinely constructive to add, and your questions are likely all answered on the site. Furthermore, if you were to challenge any of the foremost "experts" in sarcoid treatment that you cite, I daresay you'll find even less receptiveness to your input than you received on the MP site...that has certainly been my experience with the mainstream experts.
Show me the "standard" double-blind studies that demonstrate long term efficacy of the corticosteroid treatments that your so-called experts put all their patients on. I'll save you some trouble; there aren't any. In fact, Prednisone is prescribed "off label" for Sarcoid...it's never been approved by the FDA for treating the disease. In fact, the most comprehensive study ever done on Sarcoid, the NIH's "ACCESS" study (2003), concluded that steroid treatments did not improve a patient's long term outlook one bit, and not one patient was found to go into "remission", which is a myth that persists about sarcoid, even though the clinical data doesn't support the notion.
Your statement "If you are not 100% into [the Marshall Protocol], you are not wanted, or needed, as failures don't sell" is ridiculous...Dr. Marshall isn't selling anything to anyone, and his treatment doesn't recommend buying anything. To suggest otherwise reflects either malicious intent, or complete ignorance. The MP site is an FDA-monitored Phase II study site. They simply aren't interested in the site becoming a dumping ground for those with axes to grind.
You are right on one count though - very few of the "experts" in the mainstream medical community support Dr. Marshall at this point. So what? The AMA has found that it takes, on average, 17 years before research findings make their way into mainstream medical practice. Remember the other guy named Marshall (no relation) that discovered that h. pylori bacteria actually caused stomach ulcers? He was ridiculed for many years, and his "expert" colleagues would walk out on his presentations at medical conferences. He later was proven correct and awarded the Nobel prize. Of course, being ridiculed doesn't automatically make one's theories correct...but by the same token, to point to a lack of concensus as proof that one's theories are incorrect is obviously absurd. The foremost experts have had lots and lots of time and money provided them to come up with their own theories...and they've produced zilch. They're the foremost experts on a disease that they freely admit they don't understand why it starts, nor how to cure it. How very impressive are those clinical records; we should all pay homage.
Dr. Marshall himself on the other hand, had sarcoidosis for over 35 years, researched it for over 20 years, and put his disease into remission in 2002 by following his own treatment protocol. Remember, the NIH's ACCESS Study showed that using conventional treatments, nobody went into remission during the largest sarcoid study ever conducted. Think about that for a moment. That is something worth looking at very, very closely.
Concensus is for politics - science is always moved forward by the insight and heculean efforts of an innovator. And that innovator is historically always berated and called names by those who are most invested in not rocking the boat...note the highly professional tone of the posts that started this thread for prime examples of those who are desperately clinging to the status quo.
- SHS in Maryland
All I can say to all of you naysayers is this: The proof is in the pudding.
After losing a precious year doing things the "tried & tested" way of mainstream medicince, I feel extremely lucky to have found my way to the Marshall Protocol -- a treatment that offers a cure rather than just masking symptoms. After spending a year on the standard, high-dose antibiotic approach to "managing" Chronic Lyme Disease, I realized maybe a 75% improvement before starting to spiral downwards into a nice little blend of MS and Alzheimer symptoms. Within 3 months on the MP, I had my mind and body back, surpassing that previous 75% improvement by a wide margin. This was done with relatively low doses of THE SAME antibiotics.
If you are afflicted with any of the so-called autoimmune illnesses, don't look to mainstream medicine -- I don't know anyone who has walked away from them cured. How many people do you know who have died on the standard treatments for Sarcoidosis, Parkinsons, MS, etc.? Do you ever see anyone actually getting better?
As a scientist, the science of the MP just makes sense to me, and what's more: it is working -- for 100s, if not 1000s of folks, by now, with a multitude of disease labels. How much more "proof" does anyone really need?
Dr Davis,
While I certainly can't comment on the MP itself, although having suffered from severe IBS for 20+ years, the potential of anything different that might help would be of interest, and I would consider worthy of further time on my part to make a determination as to it's value.
However I am horrified by some of the inference of your introductory post, and the more direct ascersions of Dr Cannell's article. The direct inference is that only a medical physician can comment on or contribute to the area of medical science.
This is the most frightening and absurd proposition I have possibly ever heard, and is all the worse for coming from those who should know better.
As a cardiologist I would have expected you to have been the first to recognise the enormous contribution to the medical sciences by applied and pure scientists from all disciplines, over the years. Indeed the school of engineering from which I graduated was involved heavily in global studies of the physiology of the cardiovascular system.
Indeed I would go as far as saying some of the greatest contributions in science to any area have often been made by those from other fields with strong personal motivations and interests in the subject being addressed. Engineers specifically have contributed greatly to understandings of previously misunderstood aspects of natural systems, specifically by looking at biological systems as engineered solutions to problems. By often not being classically trained within a field, a scientist is often able to make the critical leaps in understanding required to find new solutions in other areas, as they are not constrained by often incorrect contemporary understanding.
Conversely a significant proportion of the questionable body of medical theory over the years has had it's genesis amongst the body of medical practitioners, who simply grasped at pet theories and built data sets and studies to suit their needs, no doubt motivated by the potential for recognition amongst their peers, that would result from “curing” the previously poorly understood.
I hope your attitude is not prevalent in the medical community, but I fear it probably is, and this does not bode well for the future of finding solutions to the many as yet untreatable conditions plaguing our modern lives.
I would suggest that until someone in the medical profession finds a solution to one or more of these syndromes or diseases, that it would be best not to throw stones in a glass house. Surely it would be more prudent to disprove Dr Marshall scientifically, as it would his supporters to provide supporting evidence beyond the anecdotal
The molecular modeling community is not getting in line. Note that the comment on Wiki about Marshall entered by one of his followers was flagged for not being a neutral point of view (npov)and thus discussion was opened up for contributors to add their thoughts. One respondant was a molecular genomics knowledgable person who had objections to Marshall's methods
http://en.wikipedia.org/wiki/Talk:Trevor_Marshall#Importance_of_Dr._Marshall.27s_molecular_biology_research
Another comment on molecular genomics and potential ways to make mistakes is found here
http://www.thisisms.com/ftopict-5628.html
Derek's experience with the MP is common, and the responses by others here, evaluating his failure as an obvious lack of fortitude in adhering to its tenets, is ubiquitous among MP apologists are all over the net making these claims anywhere someone posts a negative experience.
As a result people who fail the MP are invisible and have no where to be heard. THEY become marginalized as the nuts and whackos by these apologists.
Meanwhile, people with hopeless prognoses who are being told the MP will work and will cure them are defending it everywhere on the net, desperately believing/hoping it HAS to be right.
What I find incredible is the constant assertion by people like Dr Cannell that no one takes this seriously and therefore it is not worthy of aggressively debunkng it. Why isn't the FDA interested in a treatment that espouses very high doses of an angiotensin blocker for an off label use?
The fact is these apologists, by posting positive testimonials peppered with the pseudo science Marshall puts out, are making these kinds of attempts at debunking the MP sound a little reactionary and as if the author somehow missed the salient fact and just doesn't 'get it'.
The real fact is that this is a growing cult, whether vitamin d researchers/physicians acknowledge the fact or not.
Somebody needs to take it seriously.
I personally know of a person who lost bone density, had kidney malfunction thyroid, and adrenal dysfunction and became very ill after 4 years on the MP even though initially there seemed to be a positive response to the approach. This person is now off benicar and the numerous lab abnormalities corrected 6 months after getting vitamin d levels up from 8 to a healthy 45, and feeling much better.
This person was banned from the MP boards and attempts to make even an innocuous post about the experience were removed from the MP experiences forum. The person attempted to tell the story several times and all posts were removed by the admin board. The tale told by TM is that he is following up on this person and he implies that some data is being kept, when in reality there is no contact.
The MP theories don't hold water when you really take time to learn and understand them; I wish the medical community would take the threat of this cult seriously. It has already got a huge influence over desperate and vulnerable people.
I was on the MP for about a year. My 25 D got as low as 4 ng. I was feeling very forgetful, low energy, depressed, etc. I felt just plain lousy and was not able to work. I feel that the MP is dangerous. I have seen people of the phase II forum at the MP either die or become very sick to the point of hospitalization. The doctors in the hospitals do not know how to handle these patients with all the different types of antibiotics they are taking. It gets more confusing when you have the staff at MP trying to direct the doctors what to do through the patient's families. When some of these patients have ended up dying, TM and the staff blame the doctors and play the martyr.
What is scary to me is that the staff and TM are claiming that they have the "only cure for their malady". They seem to pray on the vulnurabilities of people who are sick and desparate. Of what I read, they tried to poison the participants against their doctors so they would only trust them.
When I was getting off the MP I was told by one of the staff that my condition (I have sarcoidosis) would only get worse if I did not continue on the MP.
7 to 8 months later I am doing MUCH better. I was able to increase my vitamin d, and have a lot more energy and am ready to get back to work. I am not getting worse as the MP staff predicted...far from it!
I agree with anonymous above, just enter marshall protocol in your search box and see how many things pop up. This is huge on the net, not something that should be ignored.
A frequent trouble with the human mind, even the most intelligent, is its desire to generalise to far.
Just because the Marshall Protocol recommends reducing vitamin D in order to help fight certain diseases, and by all accounts has been very effective in doing so for many people, this does not mean that vitamin D is now classed as generally "bad".
Surely, it is not that difficult to comprehend that vitamin D may be bad for people with these diseases, but perfectly healthy for everybody else.
What is the big deal here?
I was on the Marshall Protocol almost 4 years. The last year that I was on it (2007), I got breast cancer. Then when I had my bone density test done, I was well into Osteoporosis, which I had never been before. So much for lowering your Vit. D. I had gotten my Vit. 25D level down to 8, and was praised by the then staff! Dr. Marshall has had 3 people on his so-called protocol die, and others are having renal failure perhaps from all the huge doses of Benicar that he recommends. Between the low Vit. D levels Dr. Marshall requires and the huge amounts of Benicar he requires, people are either going to die of cancer or renal failure. Pick your poison. If you are now on the so-called Marshall Protocol, I beg you to STOP and get out with your life before you also get cancer, osteoporosis, or renal failure.
I was also on the MP for almost two years. I don't have sarcoidosis, but eight other diagnosed auto-immune induced conditions. Quite frankly, it didn't do much for any of them, except control my high blood pressure, and that was due to all the Benicar. I'm still taking the Benicar (at a more reduced dosage than the four times normal dose required by the MP), for BP control, as well as inflammation control. It's an excellent anti-inflammatory. They claim it is safe for long-term use at higher dosages, but nobody has really tried it for very long (at least longer than the four or five years the longest MP participant has been on it), so nobody really knows the effects of staying on it that long, at that high of a dose.
Also, the light sensitivity that most encounter while on the MP is incredibly restrictive. Many exist in totally blacked out "caves" with only 40 watt light bulbs in their homes, and cannot leave home at all during the day, for a year or two, and to some even so much as a crack of sunlight coming from under the door can feel too bright. This is not a normal state to be in (partially from the lowered D levels), and after some months became really annoying for me, and the hardest part of the MP.
And I can completely second Derek's comments that the MP is a cult. One of the hallmarks of cults is that they have a charismatic leader who knows it all, can do no wrong, and cannot be questioned, no matter how nonsensical his pronouncements. This is definitely true of the MP. He is horribly rude to people, and acts like a total dictator on the "study" site. People fawn and grovel to him, and I even found myself doing it at times, because that's just the way you behave there.
It is also totally true that you cannot doubt or disagree with them in any way or it gets deleted. If you do it too much, you are banned. As I was leaving the site, I politely offered to fill in any questionnaires about my experiences on the protocol,, as to what did and more importantly what did NOT work for me, for them to include in their study data base. However, nobody ever took me up on this offer. They don't seem to be interested in anybody's failures, only successes. That is hardly an objective study. Once you are off the board and out of the "cult" the moderators won't really communicate with you at all, another hallmark of cultic behaviour.
I'm sure there are a few people that the MP worked for. However, I suspect for the vast majority it was/is a waste of time. Those that claim otherwise are in denial. I just hope I haven't harmed my system permanently by having my D levels at <4 for over two years, or set myself up for something dreadful like cancer further down the line.
Thanks for the honest and open discussion here, it's a pleasure to read.
I was not aware of the cult-like characteristic of the Marshall program.
I've also received some hateful comments to this post. Generally, if there foul language or insulting remarks, I usually don't let them through. I'd prefer that this be a forum of ideas, not attacks on motivation or character.
As you can see, most of the post MPers like myself are posting as "anonymous" and not by accident. This is because of the nature of leaving the MP is much like leaving a religious cult. Yes, it's that bad and maybe even worse in that we are all very physically sick individuals looking for help so many folks are willing to do just about anything in order to get back some semblance of a life including taking extremely large unsafe doses of Benicar for years and against Dr's advice at times.
I can't find any data or study info anywhere to prove the MP theory really works or that what is happening is beneficial. If anyone can find any info to back up Trevor's work other than on the MP site owned and operated by the leader himself, please, by all means, let us know about it. This is one of the first things that alerted me that something was very wrong. You would think that after nearly 8 yrs, (his first sarcinfo site started around 2000-2001) there would be some corroboration by other researchers if there was any credence to any of the D dysregulation theories used by the MP, but I can't find anyone or anything to back up these theories.
Also, most of the early adopters I have found are either still sick, sicker or are still unable to stop the MP meds without worsening of symptoms.
You would think that if people were actually making themselves more sensitive to the antibiotics while on Benicar that anyone taking this medication for hypertension would not be able to take the normal doses of antibiotics if they got sick if that was truly the case. I had been on the MP for nearly 4 yrs and I had first started to feel better but then as I lowered my Vit D level to single digits, which took several years to accomplish btw, my bone density worsened and I began to relapse and end up sicker than before starting the MP.
I do believe those people that say they are glad they found the MP are experiencing the positive early effects of reducing inflammation which is a known by product of taking Benicar, (it's how it reduces hypertension)lowering light levels and even taking minocycline.
Eventually, the MP causes folks to realize they are not getting well or they get stuck with no where left to go. By that time the patient thinks the MP is working and they've already invested so much that it's hard to leave; just like any cult.
It's very sad and I definitely say it can cause many folks harm, some permanent and can make one more susceptible to cancer, osteoporosis, and opportunistic infections, not to mention the brow beatings and emotional scars of rejection one gets if/when they question the cult leader and his cohorts.
As for the D dysregulation, I realize now that I never had it, nor do I believe most folks do. I was able to get my D level back up just fine mainly from sunbathing this past summer and my bone density levels after less than 6 months off the MP have IMPROVED to nearly normal bone density levels for my age. I had lost all of my gains for the past 5 yrs when I lowered my D levels to single digits as advised by MP staff.
I think the MP is dangerous and very costly to put it kindly. It's misleading at best and I wish now that someone would have called Trevor to the carpet on this a long time ago so that I would have never trusted his so called work and study info.
I wasted alot of time, energy and money helping myself and others which would have been better spent in other ways. I can truly say I am now on a path to regaining my health, but with a group of real scientists, clinicians and folks that really have some true science and study history and a real track record with an end point of folks recovering.
I appreciate this forum and the ability to post anonymously so that others can read this info. Thanks for providing it.
Mark me down as another Marshall Protocol failure. Like the above poster -- several posters actually -- I too followed all the MP rules to the letter and ended up much sicker.
Yes, I was very sick before starting the MP. But while I was on the protocol I became way sicker, totally disabled and unable to leave the house. At one time during this fiasco my vitamin D read <4, which to TM and company is an excellent reading. He says the immune system is optimized when 25D is less than 12, and doesn't even begin to work until under 20. Of course, there is NO data to back this up, not a shred. And no one else in medicine or science -- anywhere I have seen -- agrees with Marshall on this, or has validated his work in any way. The molecular modeling work, for example, is held in top secret; no peers have analyzed it or have been able to comment. After so many years you'd think there'd be a piece of valid science to back it up. Just one!
At the heart of this thing is the premise of a vitamin D dysregulation, which supposedly every chronically ill person has. This, in theory, results in crazy high levels of 1,25D with corresponding low levels of 25D. That is what they saw in most of the sarcoid patients originally. But if you read the D results of the other patients, Lyme, CFS, fibro, etc., the numbers are all over the board, high and low, totally out of bounds of the theory. But this doesn't seem to matter. Somehow they explain around this discrepancy, and EVERY patient, every single one, who writes in is told they are a good candidate for the therapy. I have not seen a one patient told the MP was wrong for them.
According to the theory -- approximately -- CWD bacteria energetically convert 25D into 1,25D, fueling massive inflammation. But there are lots of inconsistencies. Like the other poster, I too raised my 25D back to normal simply by sunbathing (using no vitamin D foods at all), and my 1,25D stayed in the normal range, which according to the theory should not be possible. So clearly I never had this dysregulation either.
As for the cult-like mentality, well, it's all true. It's an insane sort of atmosphere on the (MP) message boards, with people frightened to speak the truth. Patients gloss up their "improvements" and play down their side effects (or, rather their herxes, as everything -- and I mean EVERYTHING -- is explained away as a herx) to appease the moderators and the leader. When reading MP posts of people I know I'd often think "Is this the same person I just spoke with?" as their progress reports were so much rosier than the reality they had told me.
And don't ask any difficult questions. Difficult questions are met with non-answers. If the questioner persists the tone becomes ugly, and the patient is quickly ostracized. So patients fearful of being banned, and having their perceived lifeline, the only community they know, yanked out from under them behave like frightened little lambs. I have seen it time and again: a real question, for which the moderators have no good answer, leads to attack and then banning. Anyone who questions the validity of the "science" is quickly tossed out. The idea of it being a study site is funny, as the failure rate is so high, and it's something they don't own up to.
As for the patients who have died on the MP, the moderators say this isn't true. I suppose in a way they are right, as the emergency doctors tend to yank them off the antibiotics and the 4-6x doses of benicar they'd been taking. So, technically speaking, at the moment of death you could say they were not on the MP.
Other than that it's a great program. I highly recommend it!
Physically sick patients act as the operatives over at the MP board. These said "moderators" have actually not regained their health, but are still plugging away on enormous doses of Benicar and the antibiotics as if they were Flintstone vitamins. I was on the MP for a year, and anytime I got into trouble, the "antidote" as told to me by the moderators was always to take more Benicar. I wound up in the ER with Kidney issues and an extremely high Potassium level, as Benicar has a Potassium-sparing, Sodium-depleting effect, which is obviously magnified when you are taking it at four times the standard dose as the MP tells you to. Others have had similar complaints, with one individual I know of actually having Kidney failure.
I did not have a "dysregulated" Vitamin D conversion either, but was told that I did. I spoke to many on the board, and one individual had told me that after 18 months on the protocol, that their bone density scan revealed a greater bone loss than two years previous; the last time they'd had one done. I took the liberty of asking "Dr." Marshall about this, and his response was "how long do you think it will take to reverse a lifelong accumulation of Cell Wall Deficient bacteria, 18 months or 3-5 years?"
Needless to say, I wasn't buying it then, and am not now.
The time period stated on the site that it takes the "average" participant to be "cured" of each disease state gets longer and longer, as originally it was stated that it took 18-24 months to regain normalcy. Then it was 3-5years. The last stated time frame I saw was that it could take up to 8-10 years to be cured; whatever the ailment. Obviously, the failed cases are being granted an extension.
Also, you are not allowed to take any supplements when doing the MP; at least that is what you are told by the MP "staff." Even something as simple as a probiotic is frowned upon. Some take them, and just keep it hush-hush that they are doing so, for fear of being ridiculed once again by the moderators. Even if it makes you feel physically better, you will be shunned if you mention it.
Lastly, I myself fell victim to what previous poster derek smalls refers to as the "cult-like women that worship this man" when my poor reactions to this protocol were met with ridicule by the staff. No matter what, if something goes awry, it is explained away as being your fault for not following the guidelines. As if having an illness isn't difficult enough, you then are scolded like a grade school child by someone you've never spoken to before in your life when the protocol has its shortcomings.
If being talked down to and pseudo-science interest you, then you can certainly find it over at the MP study site.
My partner is a current MP cult member, and is trying to pressure me into starting the MP. There is a persistent theory there that the bacteria are infectious, and spread through families, so you're supposed to get all your family members tested and on the MP.
I had my 25D and 1,25D tested, and, sure enough, I was a candidate.
That's when I starting looking into how the testing worked, and reading a ton of entries on the MP boards where people posted their test results.
There are three possible results:
1) Your 25D is above 16. This means you are still supplementing, and your test results are INVALID, per Trevor and the board moderators. You must eliminate all D, and retest.
2) Your 25D is below 16, and your 1,25D is above 30. This means you have the 2:1 ratio which indicates "disregulation", and you should start the MP right away.
3) Your 25D is below 16, but your 1,25D is not above 30. The lab probably messed up your test. Do it again.
What makes this even worse is that 1,25D has a lag effect. It tends to follow changes in 25D by a couple months. For instance, when 25D drops to its lowest in January, 1,25D drops to its lowest in April.
So if you have a 25D over 15, and you follow their instructions to avoid D in all foods and light, of course your 25D will drop. But your 1,25D will remain at the same level as your body starts using the stored 25D.
Their test is guaranteed to result in a positive almost every time.
If the tests refuse to show the problem, you can start the MP anyway. You can do a "benicar drug trial" and see if you feel better or worse. If you feel better, it means it's helping, and you should do the MP. If you feel worse, it's killing bacteria, and you should do the MP.
The bottom line is that no treatment will work for everyone. Clearly, there are some people that have not been helped by the MP...however, there are many that owe their lives to the treatment; I am one of these.
If you have Sarcoid or several other autoimmune disorders that have an unknown origin and no cure, you owe it to yourself to look into the MP, and once educated, to diligently apply it for a reasonable period...in my estimation, about a year. If you show no signs of improvement during that time, by all means stop the treatment and go back to the corticosteroids.
That's the thing - sure, the MP may not be effective for everyone, but the only treatment that mainstream medicine can offer as an alternative seems to be steroids. These have not proven to be effective at all, particularly in the long term. As someone mentioned above, the 2003 ACCESS study of sarcoidosis patients found that steroids were ineffective for treating the disease. Prednisone is prescribed "off label" for use against sarcoid...just as Benicar is by the MP. If you know anything about those two drugs, you know that long term use of prednisone can absolutely ravage a person. Of the two treatments, the MP is much much safer...certainly to try for a year, as an alternative to the "traditional" treatments that are known not to work. I'm sure some people have died while on the MP. What do you think happens to people who are on the traditional treatments?
As to Dr. Davis' assertion that "I'd prefer that this be a forum of ideas, not attacks on motivation or character." I have to chuckle. If you objectively read the opening posts that began this thread (written by Drs. Davis and Cannell), you will see they are in fact, rather vicious character attacks. Just the title of this thread is an obvious insult which violates this supposed policy.
I don't worship Dr. Marshall, but as someone that was close to death following 10 years of traditional treatment of my cardiac sarcoid, and who is now on the path to recovery following the MP, I am interested in helping others discover this viable treatment. I wish there were other alternatives that would help my disease - but there aren't.
So until the medical establishment can offer a viable treatment alternative, I suggest the idea that turning people away from the MP is irresponsible at best, and a violation of medicine's Hippocratic oath at worst.
It seems clear from these comments that pro-MP people brush aside the totalitarian atmosphere of the MP forum. He personally and the moderators hurt my feelings many times by being very unsensitive. I was raised in a fundamentalist religion and I have to say that the way they dealt with people who had doubts might have been even a bit less worse than on the MP forums and I was traumatized pretty well by even that.
I tried to understand to understand the science behind it and I came to the conclusion that it would take experts in every related field (including molecular modelling) and checking if references are used in context to verify if there is basis in the theory. I'm pretty sure that just being an M.D doesn't lend one quick understanding of the validity of the theory.
I could say a lot of other stuff but mostly they have been said already. I'm not saying stay away from MP but perhaps keep your own head when you try it. And remember that while CWD bacteria may exist and may be part in a lot of diseases, so may 9/11 be an inside job and the Apollo moon landing a hoax... it's all grey... except when it's not.
Is Munchhausen a disease based on a fairy story or the magic Merck manual?
a dis regulation of something controlling my skin hair eyes lungs stomach bones nerves
kidneys heart immunity blah blah blah
i have no faith in the Marshall protocol
but i see the real evidence of its success and it is too overwhelming.
in silico is the way to go.
Trevor should have proprietary rights
to what software he develops.
P.S. most health care workers are at extreme risk of developing a chronic intra phagocytic meta genomic micro biota
causing neurological problems.
either they start Quacking up or start
nesting. they might even self diagnose themselves with SARS.
Well said, Scott and Dr. Rae.I think people need to get their facts straight. And I think we all need to practice discernment, caution,and balance. The real quacks are the parrots who repeat every tired old dead-end theory fed to them in school, too lazy, greedy or stupid to think outside the box. Let's all wake up, shall we?
First of all Dr. Marshall is not an electrical engineer. He is a PhD in BioMedical Engineering with a speciality in Molecular Biology. I think he knows what he's talking about.
According to the university he attended, he graduated with a degree as an electical engineer.
In fact, much of what he presents is not as it appears.
Check it out:
http://impnvestigator.chat.ru/
I should start by saying that vitamin D is not a vitamin. It is infact a secosteroid transcriptional activator.
This paper explains Professor Marshalls view on vitamin D.
http://trevormarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
It is well documented sarcoidosis patients have a low 25D and a high 1,25D. It is also well documented that Sarcoid patients who take too much vitamin D will get hypercalcima. I know this because it was taking vitamin D tablets that put me in hospital for 3 days.
So too much 1,25D and too little 1,25 will damage your bones. In normal people the level of 1,25D is controlled by the kidneys but is not controlled in sarc patients.
I have had sarcoidosis for 19 years and have been on MP for 5 years with considerable success. My 25D was for several years unmeasurable but my 1,25D was in the normal range and I have had no ill effects from this. It took 2-3 years before I realy began to feel the benifits and I now can live a normal life. When you start MP you do get Immunopathology which can make you feel very bad but you learn how to control this.
Some people have questioned the high doses of benicar used. In fact it is not uncommon for such doses to be used to treat kidney and other diseases. The FDA have stated that there are no safety concerns with taking Benicar at these doses. You will also note that the FDA have never set a toxic level for this drug dispite giving rats massive overdoses.
It is well worth going through the paper referenced above if you want some understanding of vitamin D.
I am a bit suprised that someone has reported here of getting Osteoporosis while on MP. The most common cause of Osteoporosis in sarcoid patients is Prednisone. In fact if you were on pred for some time your doctor should have ordered bone density tests then.
There is however one situation in MP where vitamin D supplements may be required. As has been stated before 1,25D is generated by the granuloma in sarc patients. During this time the kidneys production of 1,25D is downregulated. In the final stages of MP the number of granuloma decrease and so the kidney needs to start producing 1,25D again. Unfortunatly it takes time for this to happen and so a patient may need to supplement for a short period of time.
It is very important to understand the difference between 25D and 1,25D. The kidneys convert 25D to 1,25D so 25D is a precursor and has no other role in the body. It is the 1,25D that is important and if involved in many of the bodies systems. Doctors often only measure your 25D and assume that it follows the 1,25D level. In many diseases this is not true. So it is very important to measure your 1,25D.
I was very surprised to see an account of breast cancer. Marshall has recently stated that there have been no reports of people getting cancer while on MP.
I have been following the Marshall Protocol for three years now, and I have seen many patients experience improvements. I have no doubt that there is some foundation in the basic science, but in practice, it leaves a lot to be desired for many patients. I myself have seen no improvement whatsoever and if anything am sicker than when I commenced.
In this time, I have seen other patients drastically worsen, several hospitalized, four die, and many, many, drop-out from the protocol.
I have also become increasingly disturbed at some of the medical advice given by Trevor Marshall and his 'staff', and am aware that some information on the sites is, to say the least, economical with the truth.
The reply above regarding cancer is a case in point. Trevor (the commenter, not Trevor Marshall) is correct up to a point - but what Dr Marshall more specifically said was that nobody CURRENTLY on the protocol has been diagnosed with METASTASIZED cancer. Note that he has adapted this from his assertion a while back that no-one on the protocol had been diagnosed with ANY cancer. He knows this is no longer true.
A patient who left the protocol last year (after nearly 3 years following it to the letter) has recently been diagnosed with metastasized cancer. However, as this patient is no longer adhering to the protocol, Dr Marshall's assertion is technically correct. Whether the statement is morally safe is another matter.
I am even more concerned now that I know that two of Trevor Marshall's main staff, both of whom were former board members of his Foundation, have recently left/been forced out from the organization, at least partially over concerns for patient safety. Current members posting on the forums will notice that the nurse moderators are no longer posting advice either, I believe in protest at recent events.
I still believe that were Dr Marshall to open up his data and results for thorough examination by researchers and physicians that he has made a genuine scientific breakthrough. But until that examination takes place, I would be very wary of advising anyone that this is a safe and guaranteed treatment.
Interesting that a poster named "trevor" who had sarcoidosis for 19 years is posting about the MP. And repeating the standard lines used by the MP staff.
The MP staff is extremely deceptive about Benicar. First they tell people it's a tiny little dose; no, actually, it's 4-6 times larger than the larger recommended dose, per manufacturer's dosing guidelines.
Second, they then claim that the FDA says it's safe at this level. True enough...the lethal dose appears to be far higher in rats.
But finally, they claim that the extra dosage does not have any additional blood pressure effects. Completely false, and a drastic reinterpretation of the paper they cite to back this up.
What the paper said was that the researchers found little effective change between 40 mg and 80 mg; therefore, they recommend patients use the 40 mg dose. This does NOT mean that the 80 mg has no more effect than the 40 mg; just that the increased effect is not needed.
So what happens if you take 160 mg - 240 mg per day, as per the MP? Who knows. They didn't test that high in that study.
Yet this is the study the MP likes to quote when telling you how safe Benicar is.
The poster above said: Interesting that a poster named "trevor" who had sarcoidosis for 19 years is posting about the MP. And repeating the standard lines used by the MP staff.
That implies the poster named Trevor may be Marshall himself - note that there is actually a UK based patient named Trevor who posts on the MP 'study' site, ie NOT Trevor Marshall.
Apart from the implication above, I agree completely with their comment about the inaccuracies of the MP proponents' representations of benicar safety data.
It frightens me people believe the stuff on that site.
I follwed the MP strictly for several years. I would love to believe that it is a cure, but my lab results show otherwise. I can, however, attest to the almost cult-like devotion of some of the people on the site. When I tried to objectively post my lack of progress, I was told that I must not be following the protocol properly, I had to follow it longer, the test results were wrong, or that it was because I was so sick. When people question the limits of the MP, they are told that laymen do not have the detailed knowledge to understand the protocol and that they should trust the study team. It cannot be that the protocol does not work for some people, because the science and the results of the modelling show otherwise. I am concerned that the statistics from people for whom the protocol does not work are being dismissed for reasons of non-compliance or dropping out, and that the results being put forward as proof only show one side of the distribution.
Computer simulations are only as good as the model, the input and the assumptions that are used. What you don't simulate and the assumptions you make are every bit as important as what you do simulate. Therefore, in order for results from any investigation to be considered credible, one must also publish the assumptions used. The body is an intricate system, and the VDR is only one of many subsystems that interact with each other in ways that we do not fully understand. Therefore, showing the behavior of the VDR in silica, does not mean it will work the same way in vivo in the context of the overall human system.
Science is not about trust. Science is about objective analysis of data to either prove or disprove a hypothesis. One of the primary requirements of an experiment is that it is repeatable so that it can be independently verified. To do that, one must be open with the assumptions and the method of analysis so that others can repeat your work. Unfortunately, this information has not been published, thus there is no chance for verification. A second requirement is that the analysis of the data should be objective. It is very difficult to be objective when you are experimenting on yourself. This makes it doubly important that the experiments should be repeatable and verified by others.
I am very happy for the people for whom the MP appears to work. However, that does not mean that the MP will work for everyone. I share the concerns of some of the other writers who feel that the MP site has gone beyond science. It could well be that this is a major breakthrough in medicine, but without independent verification, we will never really know.
The Dr from the vitamin D council makes a couple bold misstatements. Trevor Marshall has never claimed that the vitamin D in tablets (apart from some being D2, which will convert to D3 eventually) is any different from the vitamin d produced by exposure to sunlight.
The reasons for avoiding light & sources of D on the protocol have to do with the affinity of the drug for certain key nuclear receptors that they are trying to activate with it. Mainly the vitamin-D nuclear receptor. They are trying to activate this & a few other receptors due to the effects of an enzyme released by many persistent bacterial infections called capnine. Capnine has a high affinity for the VDR, blocking the receptor and deactivating transcription; capnine needs to be displaced by the drug they use, benicar, to activate that receptor. Benicar is being used as a VDR agonist, and for some of its effects on reducing TNF-a and interferon-g to reduce inflammation. As well as having to have the dose of benicar high enough to displace the competing capnine (and other VDR antagonist) Benicar is also displayed by 25-D, and by 1,25-D. So avoiding the light on the treatment helps keep the drug in place, and helps reign in the effects of capnine during.
I'm forced to post this anonymously due to my own circumstances. There are claims in the protocol which are unproven. Even Marshall is backing off of his 25-D to 1-25D ratio claim. Its indicative, but its far from fool proof.
Marshall could greatly benefit from sensitivity training, and his board staff are largely confined to reading scripts that can be quite dangerous for people who are experiencing problems outside of simple herx, or where immune pathology has done real damage (e.g. resulting in adrenal suppression/adrenal failure).
Marshall could also benefit from not making as many claims as facts, but rather as theory. Its a consistent trait I've observed in Marshall from 2002 on when he titled a pair of papers antibiotics in sarcoidosis, and sarcoidosis succumbs to antibiotics. He couldn't substantiate many of the claims made in those papers, instead was trying to say that because these folks get a herx response to the treatment thats proof enough that its working. To me thats mere proof that more likely than not the bacteria are present, but it doesn't speak to actual recovery,just people experiencing uncomfortable herx reactions. He would argue a leap in logic, but a herx reaction does not mean a cure. Plenty of lyme sufferers get herx reactions from antibiotic treatment too, and the cure rate for them is not all that high.
The cult like environment of the study site is indeed troubling. As was the tendency of posts with those having serious complications to disappear quickly -- back when there was a forum for crisis problems.
There are real risks to being on an experimental treatment. Unfortunately, its hard for anyone in the trial to gauge those risks, and I would say impossible for anyone outside of it considering the treatment to gauge them accurately. The vague warning of "some people may experience immunopathology too severe to continue the treatment" does not even begin to describe what is possible, and the potential other unknowns down the road.
While I have met others in the trial who are doing excellent, some at the 5 year mark with their life back, I have met & talked to others who are at the 4-5 year mark and can not get off the antibiotics, nor the benicar their immune system wreaking havoc on them. This isn't to say that a majority I've observed are not doing better at the 1-2 years mark, but its very hard to pin down if there is an actual end point where a person is restored to health again.
Dr Marshall's claim of success of greater than 16% does little to provide anyone with a good measure of its success. Only the raw data would give us the information to interpret that, thus far that is nowhere to be found. I suspect a lot of that number is due to a very high drop out rate, and lost to follow up. But some of those will be for cause, and cause unknown. How diligent they are at marking those causes I do not know.
I elected to try the treatment, and though I've had some pretty scary moments in the beginning of it - I am far more well than I have been in any of the past 8 years. That is far far from cured, but it was enough to let me resume several activities I never though I would on any of the standard treatments for my diseases.
I'm hopeful that it will result in a full reversal, but I am still quite leery of recommending it to my friends who are also sick at this point. Most could not make the lifestyle adjustments, and I'm not convinced yet that the risks are anywhere near as low as claimed. Nor am I convinced that the majority success rates in the early years of the treatment will result in cures at 4-6 years. I truly hope that they do, but I have a feeling the shakeout from the treatment is going to be a lot more mixed when more get to the 4-6 year mark. Many of those in the study may find themselves looking around at others cured and wondering why they haven't gotten there & still herxing at every dose, or their immune systems wreaking havoc when they try to go off. I can already hear the answers being given "you need another year or three on this combo here"...
This doesn't mean I don't believe that Marshall's work has merit. I think several of his theories will pan out, but I know several wont as well.
Its something to consider when you are at a dead end and the conventional treatments have failed to help. But the data isn't in to call it a cure for the majority yet. Even Dr. Browns treatments had 10-20% success rates. Greater than 16% doesn't change anything from just taking standard antibiotics treatment. Its still better than the 0% offered by immune suppression, but its a long way from a majority.
That site is full of misinformation. One of their claims is that you don't need to worry about Vit D in your diet, because you will get enough from sun:
http://www.marshallprotocol.com/view_topic.php?id=2572&forum_id=2&jump_to=47219#p47219
"The vitamin D used by the body (1,25-D) comes mostly (90 to 100%) from exposure to sunlight. http://tinyurl.com/4z25e Ten to fifteen minutes of sun exposure two times per week to the face, arms, hands, or back is enough exposure to provide an adequate amount. People can get that in only a fraction of the amount of time they spend driving each week."
There's a few problems with this.
First of all, I've seen some research claiming that the vit d converted by the skin is most likely used by the skin at that point, and doesn't get used by the rest of the body.
Second, your vit D conversion goes down dramatically with age. After 40, you're probably not getting enough vit d through your skin.
Third, vit D is produced by UVB. UVB is blocked by glass. Unless you are driving a convertable, your car has windows that are blocking the UVB, and you're not getting any vit d from your drive.
Their site is full of these kinds of problems. And like the last few posters have indicated, there is absolutely no tolerance for dissent of any kind. You don't question the Dr M; you obey.
I believe I was greatly helped if not cured by the M.P. I was diagnosed with sarcoidosis by lymph biopsy in 87. I was lucky, having few problems until the late 90' when I started getting asthma symptoms and had chronic wheezing. I stumbled onto the M.P. on 02 and used the Benicar and low dose Minocycline, as therapeutic probes as recommended by Marshall. For me, all hell broke loose, I had tachycardia, night sweats, and trouble breathing. I took this as a sign Marshall was on to something. I am still taking Benicar and Mino, and on weekends, Azithramycin, and clindamycin. Recently, I added oregano oil in high doses to this phase three therapy. I take about 200 drops of healthy health brand oregano oil daily. I put the oil in jel caps and take six a day. That's a lot of oregano oil, but it is working great for me. Working great means pain, and tachycardia, but progress as well, manifested as feeling much better. I doubt his theories are bullet proof, but if the "therapeutic probe" experiment works for you, I advise you proceed with the M.P. And throw oregano oil into the mix at the end.
My personal experience with Dr, Marshall's (Phd) Protocol has been excellent. I have studied the material as much as I can as an intelligent layperson, and have carefully considered more carefully crafted critique's than the one you've posted here.
I find that many efforts to discredit him are dishonest and misleading - such as referring to him as an electrical engineer! Be serious, please.
An excellent source of better information than Dr. Cannel is the site:
www.bacteriality.com
You conveniently left out the part about bacteriality.com being a Marshall Plan shill site by his promoter and associate Amy Proal.
The trolls really come out when their cult hero is challenged don't they?
I am on the Marshall Prtocol also. I have a background of healthy living. I was born and raised in a family without vaccinations, given a nontoxic environment, and ate organic food before anybody knew what it was. I never tasted refined sugar or artificial anything until I was a teenager. I have educated myself, and spent tens of thousands for the best holistic care and products available. Most of the current "alternative" medical wisdom is child's play to me .... I have known it for decades.
I SHOULD be very healthy. But I have been VERY SICK my whole life. My whole family has been very sick, as well. None of it worked for me, because none of it killed the bugs that were making me sick. Thanks to Dr. Marshall I am well on my way to becoming the first person in history to be 100% cured from Asperger Syndrome. Not to mention chronic fatigue and arthritis. The Marshall Protocol requires time and commitment. But given that Dr. Marshall has identified the CAUSE, there is no other option.
These last few posts absolutely capture what is wrong with the MP and Dr M.
He may be on to something. Maybe there is something to the idea that vit-d disregulation could be a factor in autoimmune disorders.
But he has extended this beyond all belief to a panacea, a cure for everything. Now it cures Aspergers! WOW! Next it's going to cure death.
Actually, Dr M believes it does. He's started talking about life extension through the MP on his site.
And Aluwings? He IS an electrical engineer. Check wikipedia if you don't believe me:
"Trevor Marshall received his PhD in Electrical Engineering from the University of Western Australia in 1984. He also possesses an undergraduate and a masters (1978) degree in Electrical Engineering."
Who cares whether he has a degree in Electrical Engineering. That is so beside the point!
Life-extension? Yes, I guess it does do that. My life expectancy was not very good before I tried this protocol, but now I do have a chance to live a full life-span. I don't know what's so wierd or far-fetched about that. That was probably what he meant.
I have been on the MP for about two and a half years. I went on it when my pulmonologist said I MUST start treatment immediately as I had end-organ damage occuring. I had investigated (as much as a masters' level social worker could-but had to get cellular microbiology texts to understand) the MP and had a physician who had agreed to work with me. I had pulmonary sarcs as well as on other organs. I was on oxygen 24/7.
The initial months were rough but I began to improve gradually and now have "high normal PFT findings" and am living as normal a life as I was before being diagnosed (and before that being VERY affected by the disease).
I have learned that sitting in front of a medical professional and making reasonable decisions about my treatments is much better than a short answer on the website from someone who does not know my personal history. Consequently, I have made decisions and engaged in behaviors (treatments) that I know would have drawn, at best, criticism and, at worst, censure from the moderators. I too have been the recipient of Dr. M's harsh responses.
I think my improved (pulmonary)health is because of the MP and as I am on the third (and final) cycle. I will see it through to the end. I do have to say though, I have requested info about the next phase (maintenance) and have not had any responses...
I will also say I am still on the Benicar and, interestingly, it has not had any effect on my hypertension (other than many medical people (MDs, PAs, nurses) have commented that the Benicar is a good medication to be on, that it will help to protect my kidneys.
So, bottom line, get all the information you can about conditions, treatments, outcomes and then PROCESS that information with as many knowledgeble people as you can, always remembering it is YOUR life, lungs, or whatever and you will live with your decision.
Thank you, Dr Davis, for letting this blog keep running. I have CFS, and a very strange autoimmune reaction to sunlight that I've never understood. I almost went headlong into the MP, and had difficulty finding independent analysis of the merits of MP until finding this. After reading everything, I'm staying away.
I think it's great that there are so many experts in chronic disease and molecular genomics that frequent this board. Really, the disinformation being spewed here about the Marshall Protocol is quite maddening. It's quite apparent that the vast majority of people posting negative comments about the MP have not researched the large (and growing) body of evidence to support Professor Marshall's claims.
As for me, I'm sure that the MP science is not yet perfected...but as a chronic disease sufferer who has been near death while following the traditional treatments, and who is much improved on the MP, I'm happy to have a viable alternative.
To the last "anonymous" poster above - What's the big deal? Try the MP for a year to see if it helps you. If you're really sick, you have very little to lose, and you can always go back to the non-effective and harmful steroids later.
I wonder if Bernie Mac (if he hadn't died while on the traditional treatments for sarcoid) would have tried a different approach had he only known about it? I guess we'll never know. No, I say stick with the "tried and true" approaches to chronic disease - after all, my family runs a mortuary and we need the money.
As I get older, I get more cynical about things and, after several days of research, I'm getting that same familiar feeling in my stomach. While the Marshall Protocol may be on to something, I keep asking "Is this all about human welfare or are the motivations not quite as pure as they seem?". Then I came across this: United States Patent Application 20070135504
http://www.freepatentsonline.com/y2007/0135504.html.
If the motivation is money or recocnition, the application has certainly covered a lot of ground and that the desire for fame and fortune is no small factor. It suggests to me that it might be the reason that the study MUST NOT FAIL even if it means engangering the health of those who choose to follow. The patent application will prevent any interest on the part of any other organisation to support the approach because, quite frankly, there is little economic gain or intellectual recognition for them. I don't expect any breakthrough from anywhere else for the same reason. The study currently under way will not be carried out objectively and even, if it fails to help most, will probably be presented as a massive success. I wish, in my heart, that this was "THE THING" and I hope that there are some people cured through the Protocol but I don't believe it will ever see any kind of objective review.
Thanks from me also.
I heard about marshall protocol and amy proal's website last week and immediately stopped my d3 supplementation.
thanks to articles like this and the people who have taken the time to comment i can safely resume my d3 supplementation.
Yet another patient on the Marshall Protocol died last weekend (April 18th). She was just38 years old. This is AT LEAST the FIFTH known MP patient to pass away in the past three years. And yet still scant warning is given that to prospective patients that they may not survive treatment.
If a patient is hospitalized on the protocol and then dies, the blame is placed by the MP acolytes on the hospital treatment, or medication that a patient took prior to the hopitalization. None of them ever consider how sick the patient was to need other medication or hospital treatment in the first place.
I never ceased to be amazed how the patients who thrive (and some of those who don't) can fail to notice and question what is happening in front of their very eyes.
(I had posted back on 9/29/08.) I am still doing much better since getting off of the MP. My condition didn't get "worse" since quitting the MP as was prophesized by a particular nurse/staff member.
It really concerns me that another MP'er (or two) has/have died since my last posting. There has to be something we can do about this. Some organization/government agency we can contact.
I do know that when I went to Mayo Clinic a year ago, I was clearly told that Mayo Clinic did not approve of this treatment and have warned their patients to stay away from the MP.
I am, however, relieved that those of us who are concerned about the MP, have a safe place to write about their concerns/experiences. When one googles the Marshall Protocol online, they are unindated with all of the multiple MP websites under different names. I had heard that there had been many websites in the past that had anti-MP posts that were taken off because of legal threats against them.
People do need to have the opportunity to view the pros and cons of a "treatment" before making any decisions. By blitzing the Internet with only the "positive" websites and eliminating the "negative" ones, people are not able to make informed choices.
I was on the Marshall Protocol for almost 2 years for CFS, and I am now almost a cripple now. I followed it to the letter and until I got so sick my family was deciding whether to cart me off to ER. The MP site is very misleading and does not inform patients of any prospective risks associated with the 'treatment'. So I wrote them up for all to see:
http://www.natmedtalk.com/general-discussion/4120-hidden-risks-dangers-marshall-protocol.html
So for anyone new interested in the MP, please consider all the risks so you don't become a statistic!
This is for those who make ridiculous posts about people who die while on the MP.
Fact: people that are on the Marshall Protocol are often very seriously ill.
Fact: These same people have normally been following the "approved" treatments for their chronic disease...many for DECADES...and yet they are still very ill and go searching for alternatives.
Fact: People with chronic autoimmunity diseases die. Patients being treated at the Mayo / Cleveland / Johns Hopkins sarcoid clinics die while following their physician's orders to the letter, yet nobody blogs about it.
To claim that the Marshall Protocol is dangerous because some patients die while on it, is as ridiculous as saying that firemen start fires...after all, they're always around when you see a fire raging.
If anything, you should blame the ineffectual, indifferent medical establishment for these deaths...in the vast majority of cases, the fact that their treatments don't work is the reason alternatives such as the MP exist.
The MP is dangerous? Hmmm. A (very) mild anti-hypertensive, combined with extremely low doses of antibiotics. Yep obviously very dangerous...I'm sure the Mayo Clinic will be very happy to put you on some nice safe corticosteroids or methotrexate for the rest of your (short) life.
I see lots of ignorance in many of the posts here. This is not normally too problematic, but in this case it's too bad since some people will be dissuaded from what might be their only chance for survival. If you are reading this and are genuinely ill, don't let anybody to tell you what's right for you. Read...not blogs, but the actual science behind the treatments. Take responsibility for your own health. Nobody - including your doctor(s) can do this for you.
Scott,
Your wording and phrases sound exactly like that of Trevor Marshall.
Trying to protect your "empire"?
Scott said: Read...not blogs, but the actual science behind the treatments.
And yet when I look for answers on the MP site, I am often referred to bacteriality.com - a blog. So should I be reading that, or not?
I am always very suspicious when I'm told not to read other opinions than that of the proponents of any particular treatment.
It's ridiculous in the context of the Marshall Protocol - if the patients hadn't read around, often via a variety of sites and blogs, they would never have encountered the MP in the first place.
Marshall's hypothesis as to the cure is likely wrong, but the idea of low level infections causing 'autoimmune' disease is reasonable nonetheless. Paul W. Ewald has suggested something similar.
About Vitamin D.
What caused the rickets epidemic?.
A pseudo-epidemic?.
Mad dogs and ....
Vitamin D and homeostasis
Ahh yes, more informed opinions. There are lots of actual scientific papers cited by the MP, not just blogs. The Bacteriality site has many links to them, and also is chock full of interviews with scientists whose independent research validates various portions of the MP research. It also has interviews with folks who owe their lives to the MP. Hey, if you prefer, go read the blogs about people who've been saved by steriod treatments. Oh, that's right, there aren't any.
To "anonymous", no, I'm not Trevor Marshall...I'm just an average guy who has cardiac sarcoidosis, and who should (statistically speaking) be dead right now. I was actually on my deathbed in the summer of '07 when I finally got fed up with the crappy care I was getting (at Hopkins no less), and I went once more in search of something that could actually work. I stumbled upon the MP, and immediately was skeptical. But, I spent two weeks reading every bit of science I could find on the subject, and realized that the treatment made sense, the hypothesis made sense in terms of my experience, and I was at my lowest, so I had nothing to lose. I had to wean off of prednisone (fun), but was able to take Benicar right away, and immediately began to feel different...mostly better, but with some other reactions predicted by the treatment. I'm two years in this month, and I am 300% better, and feel like I've been given my life back. If you've not been in my position, with your clueless doctors sending you home with ever-increasing doses of ineffective meds, all the while monitoring you like a bomb squad monitors a ticking briefcase, then maybe you can't appreciate what the MP has meant to me.
I hope for your sake, you never get that sick. But for those who ARE really really sick and know that what they're doing isn't working, don't ruin their chances of getting better because you posted some specious, uninformed, ad hominem attack against a man who is leading an assault against the status quo. If you have another viable alternative to the ineffective standard treatments for chronic illnesses, by all means communicate it. If not, then consider what agenda you're pushing with your posts.
I know what I'm supporting - I desire that anyone who is ill with Sarcoid (and a number of other autoimmune illnesses) and who is not satisfied with the results they're currently getting, should definitely try the MP...the drugs are inarguably safe, the science behind it is sound (if you read it), and my experience shows it to be very effective.
- Scott
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