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What Causes Sarcoidosis?
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Prof Trevor Marshall
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 Posted: Wed Aug 3rd, 2011 19:12

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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 09:39 by Prof Trevor Marshall

Dixie
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 Posted: Thu Aug 4th, 2011 05:33

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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



____________________
MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
leroybrown
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 Posted: Thu Aug 4th, 2011 07:03

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

Deb



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And I don't know when - Kate Bush
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Sep '09 q8h Nov '09 q6h
Seth
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 Posted: Thu Aug 4th, 2011 08:17

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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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Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
leroybrown
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 Posted: Thu Aug 4th, 2011 09:46

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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



____________________
I just know that something good is going to happen
And I don't know when - Kate Bush
Aplastic anemia Apr/10, PRCA Jan/09, Agranulocytosis 1991
25D = 25 1,25D = 58 Aug 18/09|25D<4.8 Mar/10|10.8 Nov/12
Sep '09 q8h Nov '09 q6h
Prof Trevor Marshall
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 Posted: Thu Aug 4th, 2011 09:59

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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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 Posted: Thu Aug 4th, 2011 10:23

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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 10:24 by Dixie



____________________
MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
Prof Trevor Marshall
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 Posted: Thu Aug 4th, 2011 10:55

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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 14:40 by Prof Trevor Marshall

Prof Trevor Marshall
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 Posted: Thu Aug 4th, 2011 14:39

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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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 Posted: Thu Aug 4th, 2011 16:15

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



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No diagnosis/some symptoms (more than I knew); wife with Sarc on MP; Olm 40mg q4-6h | 25D=22 (May 2014) | 25D=27 (Nov 2014)
Dixie
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 Posted: Thu Aug 4th, 2011 17:04

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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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MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
Prof Trevor Marshall
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 Posted: Thu Aug 4th, 2011 17:17

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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..

Prof Trevor Marshall
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 Posted: Thu Aug 4th, 2011 22:29

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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..
 

jlunn247
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 Posted: Fri Aug 5th, 2011 00:32

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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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Living in the land of the lost. JUST OLMECIP 5 x a day.Sarcoidosis Dx.
Bone disintegration,lungs,joint/muscle/stomach pain, diarrhea,incontinence. Weakness on my left side sweats,fatigue,neuropathy,headaches,mood swings,cognitive diss.
Frenchie
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 Posted: Fri Aug 5th, 2011 01:47

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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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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 9 ng/ml Mar 13
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 Posted: Fri Aug 5th, 2011 03:58

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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



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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 9 ng/ml Mar 13
Seth
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 Posted: Fri Aug 5th, 2011 17:13

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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.



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Dixie
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 Posted: Fri Aug 5th, 2011 17:19

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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 17:20 by Dixie



____________________
MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
Seth
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 Posted: Fri Aug 5th, 2011 17:30

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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 17:34 by Seth



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Dixie
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 Posted: Fri Aug 5th, 2011 18:20

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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".



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MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs

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