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07-22-2014, 12:34 PM   #31
mish2575
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I don't understand how it can be an auto-inflammatory, rather than auto-immune disease when there are so many extra-intestinal manifestations with this disease, not all include inflammation. . . psoriasis, for example.

Granted, most of my extra-intestinal manifestations ARE inflammatory:
Episcleritis
Psoriasis
Hidradenitis
07-22-2014, 12:45 PM   #32
JMC
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[QUOTE=Momtotwo;799160]
What do you all think about the school of thought that believes Crohn's is an auto-inflammatory rather than auto-immune condition?

CrohnsForum- Do you have any good resources for that theory? I would like to read more, but I tend to find that info on sites I don't necessarily trust.
Yes, the best one if Marcel Behr's 2010 lecture on Youtube

And this one from Thomas Barody

Last edited by JMC; 07-22-2014 at 04:17 PM.
07-22-2014, 03:06 PM   #33
JMC
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Another excellent interview on MAP/Crohns with Thomas Borody. It is in 9 parts, it is worth watching from start to finish.


In case you are questioning the credibility of Thomas Borody vs what your gastroenterologist may tell you, let's look at his Wikipedia entry:

"As a gastroenterologist, Borody is most famous for his work on the development of the triple therapy for infection with Helicobacter pylori bacteria. The triple therapy, which was invented around 1987, is a combination of bismuth, metronidazole and tetracycline. At the time, Borody was working with Dr. Barry Marshal and Dr. Robin Warren (who later received a Nobel prize for their research into Helicobacter pylori), and is considered to be the first physician to successfully formulate the triple therapy that would later become the gold standard for treating peptic ulcer disease caused by Helicobacter pylori infection."

This guy is 100% certain MAP is the cause of Crohn's disease, he does not even consider there is any argument about it.

Last edited by JMC; 07-22-2014 at 04:44 PM.
07-22-2014, 07:17 PM   #34
Axelfl3333
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hope this guy is right!but why no cure yet?
07-22-2014, 08:30 PM   #35
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Momtotwo - Do you have any good resources for that theory? I would like to read more, but I tend to find that info on sites I don't necessarily trust.
As new user site rules prevent me from posting URLs, but Google the term "Crohn’s Disease: an Immune Deficiency State Daniel J. B. Marks, Farooq Z. Rahman, Gavin W. Sewell, Anthony W. Segal" and you should see a PDF research paper you can read through.

Also Google "Revisiting Crohn's disease as a primary immunodeficiency of macrophages. Jean-Laurent Casanova and Laurent Abel" for another paper.

The reason I believe CD is an immuno-deficiency is that I am caregiver to young teen ds, who as a young child would get infections that pediatrician would off-hand comment was out of norm. We didn't think much of it at the time since we would treat it and move on. But in retrospect, I now think that a deficient immune system may have been the root of why he would come down with the different infections.

Mish2575 - I don't understand how it can be an auto-inflammatory, rather than auto-immune disease when there are so many extra-intestinal manifestations with this disease, not all include inflammation. . . psoriasis, for example.
I'm sorry, I don't know the answer off hand. The only thing I can think of is that when CD is active there is increased levels of circulating cytokins throughout the body. I have to do some research to see if these somehow correlate to EIM, or maybe there is some other mechanism at play.

Mish2575 -
Serious question. . . . when is the last time a "cure" for a major disease was administered? The flu, maybe? That is only because it makes money - most people get the vaccine every year.
And speaking out of place here since this comment was directed at JMC, but I have absolute faith in mankind's greed to come up with a cure for this terrible disease. Case in point. Sovaldi, the recently introduced drug holding great promise for treating Hepatitis C. It has astronomical costs justified by the maker as the steep costs involved in developing the drug. The prices may stick for a year or two as policies are debated and it may ultimately be beaten down to more reasonable levels. I think a cure for CD will ultimately be found within the next decade, and will come at a high cost, similarly justified. But balance that against the costs of current maintenance medication, and add the cost of treating complications, and I think that very expensive cure will be a bargain compared to the cost of current lifelong therapies.
07-23-2014, 11:19 AM   #36
JMC
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As new user site rules prevent me from posting URLs, but Google the term "Crohn’s Disease: an Immune Deficiency State Daniel J. B. Marks, Farooq Z. Rahman, Gavin W. Sewell, Anthony W. Segal" and you should see a PDF research paper you can read through.
Interesting paper, but if you agree with Thomas Borody/Marcel Behr/John Hermon Taylor/Saleh Naser (which I do) it contains a number of errors


Also Google "Revisiting Crohn's disease as a primary immunodeficiency of macrophages. Jean-Laurent Casanova and Laurent Abel" for another paper.
This is consistent with the MAP theory if I understand it correctly
07-23-2014, 02:05 PM   #37
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yes, there is something different with our innate immune system, at least for people carrying NOD2 or ATGL16 variants
since our intestines are filled with macrophages, this is very relevant to our disease, macrophages are part of the innate immune response, NOD2 and ATG16L1 are both required for autophagy and the clearance of microbes, if our macrophages can't do that they would seek other methods and increase phagocytosis. But macrophages aren't just responsible for clearing bacteria, they serve as antigen presenting cells and induce cytokine, if our innate immune system is incapable of clearing certain bacteria, a cascade of inflammation would ensue.

it doesn't therefore mean that MAP is involved, it just means that it is crystal clear our disease is related to bacteria, because all the genetic risk variants are related to bacterial handling
07-23-2014, 03:21 PM   #38
mish2575
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. I think a cure for CD will ultimately be found within the next decade, and will come at a high cost, similarly justified. But balance that against the costs of current maintenance medication, and add the cost of treating complications, and I think that very expensive cure will be a bargain compared to the cost of current lifelong therapies.
I pray that you are right. I'm just the type of person that doesn't get my hopes up, not that I'm a negative person in nature, I just don't set myself up for disappointment.
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