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Prof Trevor Marshall
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A decade ago these two authors, from Johns Hopkins, two of the leading sarcoidosis experts in the USA, arguably in the World, wrote a paper
What causes sarcoidosis?
Curr Opin Pulm Med. 2002 Sep;8(5):429-34.

Moller DR, Chen ES.
Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.

Limited but encouraging progress has been made over the last several years in our understanding of the etiology of sarcoidosis as a result of recent investments in epidemiologic, immunologic, and molecular biologic studies. A recent US multicenter study of sarcoidosis found few environmental or occupational exposures associated with a two-fold or higher risk of development of sarcoidosis, suggesting noninfectious exposures play a small, if any, role in causing systemic sarcoidosis. In contrast, recent studies have linked infectious agents including mycobacterial and propionibacterial organisms with sarcoidosis. The association of sarcoidosis with the use of Th1-promoting biologic response modifiers is consistent with a central role for enhanced Th1 immune responses in the pathogenesis of sarcoidosis. Given evidence for a genetic predisposition to sarcoidosis, these findings suggest that the etiology of systemic sarcoidosis is linked to genetically determined enhanced Th1 immune responses to a limited number of microbial pathogens.

http://www.ncbi.nlm.nih.gov/pubmed/12172448
This was a paper which made me think that Pulmonology, as a profession, might be getting a handle on Sarcoidosis, so that pulmonologists actually could start to help the long-suffering patients.

Yet today these same two experts published another paper:
Sarcoidosis-scientific progress and clinical challenges.
Nature Reviews Rheumatology 7, 457-467 (August 2011)
Chen ES, Moller DR

Division of Pulmonary and Critical Care Medicine, Department of Medicine, The Johns Hopkins University, 5501 Hopkins Bayview Circle, Room 4B63, Baltimore, MD 21224, USA.

Sarcoidosis is an uncommon systemic inflammatory disorder characterized by noncaseating granulomatous inflammation that most commonly affects the lungs, intrathoracic lymph nodes, eyes and skin. One-third or more of patients with sarcoidosis have chronic, unremitting inflammation with progressive organ impairment. Findings of family and genetic studies indicate a genetic susceptibility to sarcoidosis, with genes in the MHC region having a dominant role. Immunologic hallmarks of the disease include highly polarized expression of cytokines produced by type 1 T helper cells and tumor necrosis factor (TNF) at sites of inflammation. Increasing evidence obtained within the past decade suggests the etiology of sarcoidosis predominantly involves microbial triggers, with the most convincing data implicating mycobacterial or propionibacterial organisms. Innate immune mechanisms, possibly involving misfolding and aggregation of serum amyloid A, might have a critical role in the pathobiology of sarcoidosis. Despite these advances, there are no clinically useful biomarkers that can assist the clinician in diagnosis, prognosis or assessment of treatment effects. Corticosteroids remain the cornerstone of therapy when organ function is threatened or progressively impaired. The role of immunosuppressive drugs and anti-TNF agents in the treatment of sarcoidosis remains uncertain, and there are no FDA-approved therapies. Meaningful progress in developing clinically useful tools and new therapies will depend on further advances in understanding the pathogenesis of sarcoidosis and its disease-specific pathways.

http://www.ncbi.nlm.nih.gov/pubmed/21750528
Now I guess I should be flattered that they have now admitted that MHC/HLA axis genes are key -- something Liz and I published in Autoimmunity Reviews in 2003. But I actually am saddened that both Moller and Chen, who apparently were able to comprehend the Autoimmunity Reviews transcript I sent them, understood none of our work beyond that point.

Heaven help the poor sarcies that have gone to Johns Hopkins for advice about their treatment this past decade. It seems just as Max Planck opined a century ago: "a new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."

Sadly for those people still suffering from Sarcoidosis, these two authors still have many years of practice ahead of them. They will determine how physicians continue to treat/mistreat the disease for several decades, and I guess they will continue to ignore anything which doesn't fit into their current view of the world.

So today is a sad day indeed. This new paper will determine treatment of Sarcoidosis patients for another decade. Most of the sarcies who were active on the Internet in 2001 (but who didn't try the MP) are now dead (Gilbert Barr's passing was, IMO cynically, attributed to cancer, rather than the drugs he was taking for his Sarcoidosis). In another decade the current generation of activists who really care about helping sarcies will have also passed on. That's the way it has been for over a hundred years...

Barely a day passes without me receiving an email or a phone call from a patient suffering from sarcoidosis. I wonder if Drs Chen and Moller tell their patients that the MP might be an option? At least an increasing number of pulmonologists are starting to mention it under their breath. Maybe things will change. We can only hope...

..Trevor..

ps: Those of you who are suffering from other Th1 syndromes and diagnoses, without the luck of having a good, clear, Th1 diagnosis (by unequivocal biopsy), I feel just as badly about the way you, too, are being treated. It is just that in Sarcoidosis the diagnosis is unequivocal. There is just no excuse for continuing to sweep the new science under the carpet. Granuloma are so easy to get your mind around...
 
 

Last edited on Thu Aug 4th, 2011 08:39 by Prof Trevor Marshall

Dixie
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Hello Trevor,
Thank you for the update on Johns Hopkins and their inability to apply their knowledge to viable treatment.  Doesn't surprise me.  I've been there and their minds are like closed traps. 

Would you please clarify regarding those with sarc on the internet in 2001.  Are you referring to those that were in the first cohort? 

And, any news on the Phase 1 Trial?

Thank you for your response to my questions.

Dixie

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I'm sure that report makes Big Pharma very happy (I'm cynical too...).

Deb

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It's just astounding, since knowledge of l-forms has existed for a long time.

If I was more inclined to believe in a BP conspiracy, maybe I wouldn't be so puzzled as to why questions like the following (for example) are not seriously being considered (and I haven't actually read the paper, written in 1986, just the title):
[Are immune diseases chronic infections?]

And I really am puzzled.. is it really just the inertia of medical science that stops the truth coming out?

If I ever get asked to give money to cancer research, for example, I say no because I think all that money is going down a black hole. They might be able to come up with the odd one or two therapies targeting the lucky few that have a specific gene mutation that causes a significantly common particular form of a particular type of cancer. Given the amount of money that goes into cancer research, to me, that is failure - finding a smoking gun doesn't tell you who or what pulled the trigger.

I always was a bit amused to hear various medical people call sarcoidosis a 'disease' where a more appropriate word would be syndrome. Yet they don't treat it like a disease or consider it to be an infectious disease. They just 'treat' the host and hope the patient survives.


I think that once people start to understand chronic disease, it really is going to turn them on their heads. It makes you see life in general and the life of others in a different way.

I used to secretly laugh at overweight people. Now I know that a major reason that people become obese is most likely due to the bacteria in their systems. This has really helped changed my attitude about a lot of things regarding the human condition and the way people behave and interact. The weird thing is - we are not 100% human!

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My mind boggles at the amount of money going into research over the decades and what do you see coming out of it? Newer and more expensive drugs that don't actually cure anything. Well, like I said, that's my cynical opinion. I would so love to be proven wrong.

Deb

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Dixie,
When I was racking my memory (and using Google) to look up the 2001 (pre SarcInfo.com)  sarcies, I was only talking about those who did not follow me into the MP. The dozens who did adopt the MP seem to have flourished, except for two who died after being taken off Benicar when they sought help from Hospital Emergency Rooms for shortness of breath, and one whose death was a tragic mistake. Most of the early adopters are not posting much any more, I still get emails from them though :) Some were hit hard by 'stage 5', some were not... As you recover, you tend to find less and less time to dwell on the past, and often don't put aside the time to mentor your friends here at the study site :)
 
You will find a sampling of the early adopters in the two forums:

First Year Alumni Updates

Members' Success Stories

as well as in their progress threads.

Dixie
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Hello, again, Trevor,
Thank you for answering my question.  I take this opportunity, too, to thank you for the video conferences.  Great information and encouragement.

You did not answer my question regarding the Phase 1 Trial.  Is it underway?

Thank you again for reading and responding to my questions.

Dixie

Last edited on Thu Aug 4th, 2011 09:24 by Dixie

Prof Trevor Marshall
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No formal trials of Pure Olmesartan have started yet, we still have a lot of formalities and groundwork to put into place. I doubt there will be any formal trial commencement this year.
 
UPDATE: Actually, I had to update the above statement, there was significant movement today, and we may now only be a few months away from getting capsules to the first few patients. It is just impossible to anticipate the hurdles we have to jump, as moving a new drug through approval is such a complex project.

Last edited on Thu Aug 4th, 2011 13:40 by Prof Trevor Marshall

Prof Trevor Marshall
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Actually, I had to update my previous statement, there was significant movement today, and we may now only be a few months away from getting capsules to the first few patients. It is just impossible to anticipate the hurdles we have to jump, as moving a new drug through approval is such a complex project.
 

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What was the conclusion that the author came to with What is the Marshall Protocol - and should we use it?

Dixie
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Trevor,
Thank you for the update.  I am hoping to have the opportunity to be in the Phase 1 Trial. 

Patience is certainly necessary for this process and you seem to be doing well with the "jumping through the hoops" thus far.:)

Dixie



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Rico,
Here are the key parts of the summary text, as sent to me (after the publication) by Milman:
 "Marshall’s theories are controversial and provoke great discussion among scientists. They stand in contrast to our present knowledge about the multiple functions of vitamin D. The treatment implies that patients are brought to a state of vitamin D deficiency. There is an urgent need for more basic investigations and documentation of Marshall’s theories before this treatment can be recommended on a broad basis. For example, the postulated effect of the angiotensin II receptor antagonist olmesartan medoxomil is documented by biochemical simulation, i.e. laboratory studies have not been performed in order to confirm the theory. Furthermore the treatment carries the risk of serious side effects, e.g. osteoporosis due to vitamin D deficiency, as well as low blood pressure and renal failure due to the antihypertensive effect of olmesartan medoxomil. The longstanding (for years) treatment with antibiotics implies the risk of development of resistant bacteria and the risk of allergy against these specific antibiotics.  Concerning sarcoidosis, the actual status is that no valid studies exist that we can use to evaluate the positive or negative effects of Marshall’s treatment. Until such studies have been performed we cannot on the basis of our present knowledge advocate this treatment until better documentation has been produced"
..Trevor..

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Those of you who have not discovered our old SarcInfo site might like to review our 2004 analysis of the NIH ACCESS study results, where you can see evidence of data misinterpretation (possibly deliberate) and document manipulation. The abstract commentary is not supported by the fulltext.

Sadly, this is typical of what is offered to those suffering from the disease -- a totally inadequate "evidence base" of studies, with most of the treatment pragma dictated by "consensus statement" -- agreement between a group of physicians at a conference.

http://autoimmunityresearch.org/access-2yr.htm

..Trevor..
 

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I cant recall if somebody on this site already mentioned conspiracy expert
Michael Tsarion.   http://www.youtube.com/watch?v=7Gfql4DZUek

Our present society is controlled by the most tortured minds ever.

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Seth wrote:

And I really am puzzled.. is it really just the inertia of medical science that stops the truth coming out?


Twenty years ago when I was a student I spoke to a postdoc who told me he had started his research career thinking that the cures to illnesses such as cancer would come from detailed understanding of cell structures and interactions, but had quickly changed his mind and concluded it would be much more effective to just hit illnesses with drugs and see what worked.  This was at Cambridge where biochemistry had been advanced at an incredible rate since the start of the 1950s, but most of the famous names had retired over the previous decade - Sanger, Perutz, Crick, Milstein, Klug, Huxley had gone, and the culture was changing with the next generation.  Last week I spoke to a friend of mine who is still there, and selling patents is the daily goal; and although I got a lot of interest when I described the process of infection by CWD bacteria there didn't seem to be any hope of financial backing in the current climate.

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On a similar theme:

'The EU’s anti-fraud watchdog organization, OLAF, has launched an investigation into whether potential conflicts of interest at the European Medicines Agency (EMA), the European counterpart to the US Food and Drug Administration, are hindering its regulatory role.

'One reason EMA may have a tough time being independent is that 80 percent of the EMA’s funding comes from pharmaceutical companies, European Parliamentarian Michele Rivasi told ScienceInsider. The investigation will determine whether such financial ties create a conflict of interest that could potentially bias the agency’s regulatory decisions.'

http://news.sciencemag.org/scienceinsider/2011/08/anti-fraud-agency-puts-spotlight.html

Seth
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Does anyone else notice the obvious copy&paste work that goes into a lot of papers?

e.g. How many times have you read :

"Sarcoidosis is a multi-system granulomatous disease of unknown cause" or "Sarcoidosis is a multi-system granulomatous disease of unknown etiology".

I feel a bit better about a paper that doesn't begin in that exact way. It makes me hope that the researcher has started thinking, rather than simply assuming/assimilating/compiling.

Dixie
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Hi Seth,
I would like to comment regarding your earlier post.  I, too, have changed my attitude towards others regarding their weight, etc. upon learning about the body.  You are so accurate regarding it even affecting how we behave, besides being sick, I mean.

It would be so nice to feel better and have this knowledge.  It's sad that we have to be sick to learn these things.  I guess that we should be thankful that we are learning because many are sick and still have no clue.

Good to hear from you.

Dixie

Last edited on Fri Aug 5th, 2011 16:20 by Dixie

Seth
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Dixie,

Yes, I think there are a few lessons I might never have learnt if I hadn't gotten sick.
It made me deal in a much more compassionate and understanding way with my very noisy upstairs neighbour who has OCD and other issues. Instead of storming up the stairs in anger, I tried to suggest something that would help him and me at the same time. I actually felt sorry for him, as he was at the mercy of something that he couldn't control.

Just have to add the Dalai Lama's quote for today:

"If we try to secure the well-being of others, we will, at the same time, create the conditions for our own."

Last edited on Fri Aug 5th, 2011 16:34 by Seth

Dixie
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Hi Seth,

Thanks for sharing how you are learning patience with others.  MP is definitely a patience teacher and I believe that the meds are helping me in that department as well.

Admin: edited with permission from Dixie to keep post "on topic".

Seth
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"we cannot on the basis of our present knowledge.."

- See? The problem is, you try and tell someone, "Ok, sit down and listen for a minute. I have a good one here, and if you are prepared to throw all your old thinking out the window for just one minute you might see that it makes sense", and they come back with "laboratory studies have not been performed" (help me out and do some), "the treatment carries the risk of serious side effects" (er, worse than steroids?), and "vitamin D deficiency", "risk of development of.." and "risk of..", "risk of.." ("You can get killed walking your doggie!" - Al Pacino).

People find it so hard to let go of existing, ingrained 'knowledge', let alone align themselves with something they are unsure of. They could choose not to believe in the moon and stars because they might not understand how they work, but the moon and stars might still exist anyway.
It is a shame that mainstream medicine is almost like a religion. Mostly, people are not taught to question the things they are told. The balance of power is held by perception only. All that people have to do is question it, and it's shortcomings are evident.

Someone should say to all graduating med students, "Doctor, please! Peer pressure is tough, we know (we were all kids once), but be an independent thinker for a minute!"

Dixie,
Can you drop the Bactrim and feel better? It might mean your healing process will take longer, but you'll get there in the end. It sounds like the pure olmesartan might make quite a difference (maybe better palliation) to the people like yourself that are experiencing strong reactions to abx.
I'm going to start on a small dose of Bactrim soon, so that'll be interesting!


Note from ADMIN: I edited out comments here about religion. You may discuss religion in the "Lifestyles" area , although it is discouraged as some of our members are quite passionate about their beliefs. This is Trevor's "perspective" and is watched by hundreds of members who want it to focus on the MP science, please.

Last edited on Sat Aug 6th, 2011 04:32 by

Deedee
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TM thank you for posting the most recent Chen/Moller paper. It is important for us to have these types of discussions. Many of us read research and having the analysis of the research team is very helpful.

I find it interesting that the recent paper gives repeat nod to a bacterial link, if only as a "trigger." However, much research continues to be centered around around statins, designer steroids, nicotine patches, etc.... Of course, we know the research is often funded by drug companies and orphan drug tax breaks in order to find new ways to develop and market drugs, and therefore, the research is not truly driven by motives to find the cause and cure for a disease. No research gets done by universities or research facilities without funding and there is nothing "in it" for the drug companies to fund research based on old cheap antibiotics and Benicar (which is almost at the end of it's patent.)

However, For Moller and Chen to keep pushing steroids and not working harder to understand the "bacterial links" and the science of the MP is unfathomable. The suffering they had to have witnessed over the years is incalculable, and how they can sleep at night without turning over every rock in a quest to find the cure is unimaginable. Much science is discovered accidently by observing what works even when an full understanding is not known. Why not at least observe the MP, Drs Moller and Chen? Why not give your patients the option of trying an "unproven and controversial treatment" since according to you, no treatment exists anyway? The imagined negative side effects of the MP are certainly no worse than the proven side effects of steroids, methotrexate and other immune suppressing sarcoidosis treatments.

Since by their own accounting, "there are no clinically useful biomarkers that can assist the clinician in diagnosis, prognosis or assessment of treatment effects." and no "FDA approved therapy", I am all the more convinced that the personal improvements (labs and symptoms) I have realized while undertaking the MP is all the evidence I need that the treatment works. Certainly, I do not plan to sit back and deteriorate to the point I "need" steroids to (temporarily) avert organ failure because our main-stream researchers can not get their head around the science of the MP. I am just truly sad and sorry that decade after decades continues to roll away as more and more suffer and die because of a disease that has an effective treatment, but that continues to be ignored by our main-stream researchers.



Thanks for the post.

Last edited on Sat Aug 6th, 2011 07:08 by Deedee

Prof Trevor Marshall
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Deedee,
There is one thing I think you are missing - that corticosteroid treatment works well (at least in the eyes of Dr Om Sharma, whose website makes clear is amongst the leading sarcoidosis expert in the world). Dr Sharma gave a presentation on Sarcoidosis at the 2005 WASOG Patient Conference in Denver, and you can look over his presentation at the special MP-members site:

http://marshallprotocol.com/flash/sharma.html

You can see that when he is talking about the liver disease receiving "no treatment," he takes as-given that the patient is of course on prednisone anyway, as almost all his patients are. That is the base therapy. As he says later "things got worse because the patient didn't take the medicine" when describing a graph which shows a patient having problems with prednisone. Of course there is no problem with  the drug - it works great - it is simply that the patient wouldn't take it. No consideration of why the pt couldn't tolerate the drug, of course.

I hope this excerpt from the conference DVD gives you a little insight into the other side of the track - why the patients get worse - it is because they don't take their medicine. At least, that is my interpretation of what he is thinking, your thoughts are welcome.

..Trevor..
ps: the disclaimer at the beginning of the video was apparently because members from the MP cohort were in the room, trying to chat with patients and physicians at the meeting.
 

Deedee
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I will have to view this from another place other than my home. I have Hughes net and the system will cut me off if I watch a long video. I started to watch it. I see it is from 2005.

I have seen some more recent papers suggesting that unless sarcoidosis is threatening organ function, it should be avoided.

This one states up to 70% of patients relapse following steroid treatment:
http://chestjournal.chestpubs.org/content/111/3/623.full.pdf

Perhaps steroids are not as quickly prescribed as they once were, at least by some physicians. I know that more are certainly questioning the wisdom of prescribing it to everyone with a sarcoidosis diagnosis. Here is something from 2011 from Judson http://emedicine.medscape.com/article/301914-treatment
Corticosteroids are the mainstay of therapy.
Generally, prednisone given daily and then tapered over a 6-month course is adequate for pulmonary disease. Earlier recommendations suggested an initial dose of 1 mg/kg/d of prednisone; however, more recent expert opinions endorse a lower dose (eg, 40 mg/d), which is tapered to every other day long-term therapy over several weeks. Most patients who require long-term steroids can be treated using 10-15 mg of prednisone every other day.
Data suggest that corticosteroid use may be associated with increased relapse rates.
Occasionally, certain patients cannot tolerate or do not respond to corticosteroids...........

For pulmonary disease, asymptomatic PFT and/or CXR abnormalities are not an indication for treatment. In patients with minimal symptoms, serial reevaluation is prudent. Significant respiratory symptoms associated with PFT and CXR abnormalities likely require therapy. For such patients, treatment is indicated if objective evidence of recent deterioration in lung function exists. Corticosteroids can result in small improvements in the functional vital capacity and in the radiographic appearance in patients with more severe stage II and III disease.

One recent study demonstrated an approach that may minimize the use of corticosteroids without harming the patient. This is accomplished by withholding therapy unless the patient shows at least a 15% decline in one spirometric measure associated with increasing symptoms or, if asymptomatic, withholding therapy unless the patient shows worsening PFTs and a change in CXR.

--------

I appreciate everything you do for all of us, and for giving us all an alternative to steroids and a treatment that actually works.

Dixie
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Seth,
I think that I sent you a response to this already, but I can't find
where I replied.  I was going to try and keep my abx where they were
until Friday because I have a Skype consult with Dr. Blaney on that
afternoon.  I have decided not to wait until then because of my
symptoms.  You know, it's really difficult to explain, but since
starting the slightest, and I mean slightest, amount of Bactrim, I've
had some terrible hurting, but somehow my back feels less tense.  I
just can't explain it.  But, the inability to sleep has gotten much
worse along with bowel and stomach issues and I've started with
drainage and itchy throat, so I have decided to cease the Bactrim.

I'll post after my consult with Blaney and let everyone know what he
suggests.  You know, sometimes I start to feel that I'm grasping at
straws.

Thank you for your suggestion.

I look forward to hearing from you again soon.

Dixie

Dixie
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Seth,
I can't discern the herxing because I was so symptomatic when I
started MP.  I am able to tell that the Bactrim has caused some
increase in symptoms and it always concerns me that it's disease
progression.

You'll have to let me know how the Bactrim goes with you.  I will be
interested in what you experience.

Thanks.
Dixie

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Dixie,
Please post your progress information in your progress thread, and not in my  "perspectives" forum. This is for discussion of science. not for discussion of progress. I hope you understand.

..Trevor..

Dixie
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Trevor,
Sorry. 

Dixie

Seth
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Sorry if I got sidetracked back there.

I read that steroids have the effect of reducing the size of lymph nodes, etc. I'm assuming that includes the spleen, and from what I remember, it does so within a reasonably short period (over the course of steroid treatment).

On the other hand, if I started to eat a lot of food that supressed my immune system and started taking vitamin D, I get the feeling that it wouldnt have the same effect.

Obviously the steroids work through different pathways.

My problem is, with an enlarged spleen, I feel quite vulnerable. For example, I wouldn't feel confident to cycle anywhere, just in case of any kind of impact.
Martial arts are also definitely out until I'm more robust and have the energy, anyway.

I don't have much info on the reason for an enlarged spleen (apart from similar explanation for lymph nodes swelling), or why it is particularly enlarged (also more so than when I was first diagnosed).

Is the increased size just down to IP? Is there anything to do to help my system remove the 'junk' from my lymphatic system?

I'm not keen on taking steroids for the obvious reasons, but is there, indeed, any dose of steroids that may be beneficial dealing with sarc, or do they simply supress our immune system too much to be helpful?

Seth
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On further reading, it sounds like the prednisone definitely reduces lymphadema for patients.

I'm just curious, as it seems a short period in which to flush out the lymph system whilst on prednisone. The lymph nodes then appear to 'clog up' again once the drug is stopped, so does that not mean they've gotten rid of some 'junk' load?

Perhaps the steroid therapy in sarcies might work better in small pulses, just as the the pulsed,low-dose antibiotics seem to be more effective in the MP?

Last edited on Mon Aug 8th, 2011 09:49 by Seth

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Corticosteroid therapy in Sarcoidosis invariably ends in a one-way slow, painful, slide  to the grave.
 
Some years ago we tried to dampen MP Immunopathology with corticosteroids, leading to disastrous results. Don't even think about trying such a thing yourself, Seth.

Your spleen will shrink eventually, there really is no other alternative than waiting for your body to heal to the point you can start cycling again. As for martial arts - you may not be so interested in that once you get your life back :)
 
..trevor..
 

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Why would you even consider something that would hamper your body's ability to fight the bacteria in exchange for a short-term symptom relief?

If you think about why your spleen might feel large, you will feel encouraged. As part of your lymph system, your spleen is processing lots of dead bacteria and debris. My spleen became quite swollen in the first year of the MP, with lots of spleen jabs. All that is gone now. In my (now) third year I never feel my spleen anymore and it has been months since my lymph nodes under my ears have been large. I also don't feel like my throat is swollen from lymph nodes.

A year ago taking tiny bits of Clindy caused severe muscle aches. Now that my bacterial load is down, I am on full dose Clindy with Deme and Mino and having very mild IP.

Healing on the MP takes time. But it is a h-e-a-l-i-n-g and not a steriod short-term symptom relief that will cause horrible side effects of their own, plus make your condition WORSE.

Seth
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Please remember that I said I don't want to take steroids.
I am getting a bit sick of this disease, but I'm not *so* impatient :)
I'd be just as opposed to a splenectomy.

But I thought I was asking valid questions. I kind of got some answers, geared at dissuading me from taking steroids. I haven't read anything about people trying a low steroid dose when on the MP, or any other therapy for lymphadema/splenomegaly. Cranial sacral therapy and lymphatic massage does help also, producing more IP, apparently.
I know already immunosuppressive therapies are contraindicated, but it is just a line of thinking - sometimes contradictory things DO add up to something completely different (Alloys, for example. Perfumes for another), and medical science is not always so cut-and-dried. I got some answers anyway.

I've been wondering for some time if the enlarged spleen is just due to IP.. I suppose I can only guess that it is. It is difficult to gauge sometimes whether anything is happening.

I was also hoping to get some feedback from anyone that had an enlarged spleen too. Apparently, it's not such a common symptom. So thanks Deedee for your input :)

Deedee
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Seth, remember that steroids shut down your immune system and the MP awakens your immune system. It is not the antibiotics doing the work. They only augment your own immune system that has been reawakened by the Benicar and lowered Vitamin D. Taking steroids would "cancel out" the benefits of the MP, plus steroids cause their own serious side-effects such as bone loss, diabetes, weight gain, rage, and other serious problems.


The original topic was a discussion about the CAUSE of sarcoidosis. Doctors that prescribe steroids are not treating the cause. They are treating the symptoms caused by inflammation. Steroids have never cured anyone and there is some compelling research that suggests that taking steroids can even make you worse. That would make sense because your spleen might feel better, but the bacteria are having a field day multiplying while you immune system is shut down. No wonder that 74% of those who take steroids find their symptoms back within a few months after discontinuing the steroids,and no wonder that people who take steroids have worse outcomes than those that do not.


I used to take pain meds for my spleen pain and now I don't even know I have a spleen! Hang in there, friend.

Seth
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I didn't mean to make this about me being impatient with my spleen. Actually, my spleen (to anthromophise..) has no invested involvement in these posts either ;)

I was concerned about what causes the splenomegaly, which is part of the 'What causes sarcoidosis?' question, so I'm fairly on-topic, I hope. There seems to be little info on the actual cause of splenomegaly, so hopefully I am asking the question in the right forum.

Perhaps I wasn't asking the right question.

I do understand the mechanism of VDR supression and activation, so I'm not talking about doing contradictory things, I'm asking, as terrible as steroids appear to be (and are apparently reported to be), is there, without question, no *complementary* action?
I'm not talking about taking enough steroids to effect 'steroid therapy' or anything combined with antibiotics for example.

My point was, if you suppress your immune system (for example, with steroids), *it appears that* your body does clear out the 'junk' from your lymphatic system *fairly quickly*.
So, is that just normal bodily processes combined with the reduced output of dead bacteria, or is actually the steroids working via another pathway?

I'm guessing that it is the former explanation, but... well, there's my question.

If so, then the fact that my spleen (I should say "one's spleen") is still enlarged is due to the simple fact that it has been through a stage of being overloaded, and at some point it will hopefully catch up with it's workload..


Prof Trevor Marshall
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Seth,
When you suppress the immune system, the body stops recognizing 'the junk' and so stops producing the inflammation (which the body generates to neutralize the source of 'the junk.')

The microbiota can thus proliferate without any interference from the immune system. The patient often feels better because the cytokine cascade disappears, Doc thinks all is well because the inflammation has receded, and everybody is happy - at least for a few years.

At this point the microbiota start to overcome even the suppressed immune system, and a 'relapse' occurs. The relapse also occurs when people stop taking corticosteroids, as the inflammation often floods back. The amount of prednisone a pt needs gradually increases as the microbiota flourish. For example, one non-MP sarcie (a message board administrator) was taking 130 mg of prednisone when he had a relapse, and died (in hospital) of pneumonia (acute infection). His body could not fight off the deadly infection, the immune response was too suppressed.

A similar situation occurs when people use the new, expensive, Biologic drugs to suppress their immune response. Here is a paper (just out) giving some idea of the risk - one serious acute infection on average every 10 years is what they found... So if you are expecting to live comfortably past the 10 years mark you are betting against the statistics :) Sarcies, on average, die 10-20 years beyond diagnosis (that is the number from WASOG, the sarc pulmonologists).

Hope that helps

..Trevor..

ps: have you noticed how the dose of Vit D being advocated by the zealots has slowly increased, year by year? Many of them gain their trust in Vitamin D by taking it themselves. They know that Vit D is good for them - they feel much better when they take it :X
 

Seth
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Trevor,

Yes I understand the explanation you've given.

But that doesnt really get to the crux of my question. I think I answered it myself anyway, but I feel as though my answer is still a guess..

It sounds like 'healthy' people can tolerate more or less VitD and/or sun exposure and they're ok (for now..). With the sick people the D situation is quite different.
A VitaminD 'pusher' might take a huge dose, flex his muscles, and say 'look, I'm ok!'. At the same time, there are also many people that get little D from diet or sun and they have no symptoms.
So it's hard to reason with the VitD pushers.. Maybe when they begin to get sick they will start to look for the truth.

Prof Trevor Marshall
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Seth, those who benefit from taking Vitamin D must already have an immune dysfunction, or else they would not benefit from the immunosuppression they are inducing.

When you recover, you will probably find that you, like most of our members, have suffered from suboptimal health since childhood. Maybe a discrete illness couldn't be diagnosed, but people still suffer (unless they discovered Vit D's palliation). Suboptimal health is common in this day and age.

I am giving two talks soon which will go over these issues in detail. At the EPMA conference in September I will be talking about Public Health issues "Interplay between Microbiome and the Host's Immunity as a Factor to be used for Prediction," and at the Asian Congress on Autoimmunity in November I will be discussing "Why Vitamin D is more effective in early stage disease than in late-stage disease"

Hopefully these will fill in the remaining open issues in your mind :)

..Trevor..



Teresa Green
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Team,

I went to the Optometrist last week to get my very first prescription ( i'm 52 years old ) for reading glasses.   He was very impressed with the quality of my eyes, particularly with my ability to read in the distance.  I was able to read two lines below 20/20 vision.  However for reading I needed glasses, which he said was normal at my age.

I had told the Optometrist that I was suffering from Uveitus about two and a half years ago and that the Doctors put me onto steroidal eye drops until I found the Marshall Protocol.   The Optometrist said you are fortunate having found an alternative therapy, as he has seen others with uveitus on the steroidal treatment that went on to develop shocking eye problems.

It was only when I heard him say this that it dawned on me, what future I had avoided for myself.    How lucky I was to have stumbled onto the Marshall Protocol and spend the time to read firstly about the science and then the successes others have achieved.

Teresa

 

NWLinda
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Location: Washington USA
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It was only by the most bizarre coincidence that I ever stumbled upon the Marshall Protocol. I consider myself extremely fortunate to know about the MP.

Sarcoidosis is the ONLY diagnosis that makes sense of my seemingly non-related problems: all the white spots in my lungs that showed up on an x-ray, the bump on the back of one eye, my adrenal problems, the psychiatric problems endured by my family that have been handed down from one generation to the next, the inflammation on my neck, the otosclerosis that doctors said was "genetic," and who knows what else.

After being on the M.P. for 6 months last year, I quit and tried to find a natural approach to kill the bacteria. I used Rife machines and Bob Beck's electro-medical devices. I used homeopathy and (lame) attempts at alkalizing my body so the bacteria couldn't grow. Nothing seemed to do much of anything.

Now I'm back on the MP, killing off bugs in my middle ears, sinuses, eyes and elsewhere. And even though, quite frankly, it hurts, I'm so happy and grateful to be on the protocol, knowing that, at last, I've found a scientist who knows how to kill these L-form bacteria.

Thank you, Dr. Marshall. One day I hope all Americans learn about this awesome treatment. How sad that Max Planck's statement is still true about how the "Old Guard" has to die before new scientific findings become accepted. At least we have the internet, since doctors know so little about L-form bacteria and even less about how to kill it.

NWLinda

Prof Trevor Marshall
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:)

be-well
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Chen and Moller's most recent paper on Sarcoidosis seems to summarise its findings with a message that says, well yes there is great progressive strides in understanding pathogenesis, but actually its not worth writing home about so lets leave it at that until the answers we seek knock on our door and say 'boo'.

Their first paper can be interpreted as a solid watertight basis to recommend immunostimulation as the most logical next step, particularly for those who are not in the latter stages of progressive th1 disease and therefore in a position to make faster progress, thus validating the pathway to recovery for others to consider.  The second then kills that off with its clinical directive to continue prescribing steroids as the only safe, sensible intervention even though they add, their role "remains uncertain".

What is it they are just not 'getting' if they are familiar with a MP intervention structure. I assume they have articulated their reservation at some point.  Is it partly due to the long years of universal reliance on steroids which feed into a faster disease progression and conceal  inflammatory data,  that has encouraged a lack of 'fire in the belly' for doctors to say hey, this really looks promising, let's give it a whirl, let's discuss it with our patients ?

Last edited on Fri Mar 30th, 2012 07:04 by be-well

Prof Trevor Marshall
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The 'fire in the belly' is an issue, as Dr Om Sharma, from USC, effectively controls publication of any paper with 'sarcoidosis' in the title. Dr Sharma is the universally recognized peer-reviewer for sarcoidosis papers, and is on the editorial board of just about every pulmonology journal. Anger him, and you lose your path to publishing, your path to success.

But the problem runs deeper than that. Most pulmonologists have tried everything (their words). For example, Moller and Chen were trialling a minocycline /doxycycline therapy at one point. It didn't work. Therefore, microbes can't possibly be the cause of the disease (do you understand their logic in drawing that conclusion?). Similarly, the MP can't possibly work, either (by the same logic).

There is a simplicity in 20th Century clinical medicine which many physicians seem to hold dear. They need to release this, if they are to be successful in the 21st Century, but most seem to think that maintaining the status-quo should be their career goal.

Neither Moller or Chen have ever bothered to email or phone me, or contact any of my colleagues :X

..trevor..
 

wrotek
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Posts: 3172
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It is amazing how they define success.

I once got letter from pulmunologist, asking for informations, who does biopsies for sarc patients and was himself diagnosed with sarc.

Freddie Ash
...


Joined: Fri Apr 8th, 2005
Location: LeSage, West Virginia USA
Posts: 1019
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HI ALL

This is Fred in  WV.  My family doctor once (since I have been on the MP) to tell him how to diagnose another doctor patient of his with sarcoidosis.

Remember, we are all in this together and I am pulling for us.

Your friend in Sarcoidosis
Freddie

be-well
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" there are no clinically useful biomarkers that can assist the clinician in diagnosis, prognosis or assessment of treatment effects" (chen/moller). 

To claim stagnation at such close quarters for a promising way forward in treatment defies logic, particularly because both doctors will no doubt be familiar with the sum total of universal mortality and suffering from the  standard palliation.

Sarcoidosis does not belong exclusively to men of medicine.  Everyone whose life has been touched by it, has a vested interest.

I am familiar with the godlike aura of some 'status quo' clinicians over the years.  But what I have noticed more recently here in UK is a definate confusion about the subject of 'vitamin' D and more care in the benefit to risk equation before prescribing steroids.   A caution has been nurtured which is here to stay and more docs are delving deeper.  Things are moving!

I think pure Olmesartan will bring a closer more careful scrutiny to a wider audience in the very near future.











Last edited on Mon Apr 2nd, 2012 09:53 by be-well



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