# The (mis)labelling of Crohn's as an autoimmune disease



## kiny (Oct 30, 2011)

*The (mis)labelling of Crohn's as an autoimmune disease and no evidence of a self-antigen*

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2810%2960282-6/fulltext


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## chrisnsteph1022 (Oct 30, 2011)

It is an autoimmune disease.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/


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## kiny (Oct 30, 2011)

chrisnsteph1022 said:


> It is an autoimmune disease.
> http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/


That would be autoinflammatory.


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## chrisnsteph1022 (Oct 30, 2011)

Quoted from the NIH:
"Normally, the immune system helps protect the body, but with Crohn's disease the immune system can't tell the difference between normal body tissue and foreign substances. The result is an overactive immune response that leads to chronic inflammation. *This is called an autoimmune disorder.*"

I have never heard someone say Crohn's isn't an autoimmune disease.


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## kiny (Oct 30, 2011)

chrisnsteph1022 said:


> I have never heard someone say Crohn's isn't an autoimmune disease.


Then find a doctor, any doctor, who can tell you the difference between autoimmune and autoinflammatory, or contact any doctor in that link I gave you. 

Will you do that instead of typing stuff into Google?

I can find you 20 links that tell you Obama is white.

_"Nettleton Middle School Declares President Obama Is White."_

You understand the issue with just searching for what you believe?


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## chrisnsteph1022 (Oct 30, 2011)

My common sense tells me to trust the National Institute of Health over some journal I've never heard of. And no, I didn't search autoimmune. I searched Crohn's and went to a reputable site for a description.


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## chrisnsteph1022 (Oct 30, 2011)

Besides, who really cares what category it gets put in? I don't care what anyone wants to call it. It doesn't change how it affects me or the treatment of it.


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## D Bergy (Oct 30, 2011)

I think of it as a weak or dysfunctional immune system.  I do not think that the immune system attacks its own tissue either.

I am quite convinced there are one or more pathogens that the immune system cannot effectively eliminate, resulting in chronic inflammation.   A normal immune system would not have this problem.

There are many theories, and it is possible that the answer may not be always be the same for everyone.  All we have is a collection of symptoms, which may or may not be caused by the same thing.

Dan


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## chrisnsteph1022 (Oct 30, 2011)

Don't make ASSumptions. I have no idea who sushex is. You posted a link to some journal I've never heard of stating Crohn's isn't autoimmune. I posted a link to the NIH stating it IS autoimmune. 

And I never said I didn't use Google. I always use Google. I just said I didn't search autoimmune. All I searched was Crohn's. Make sure you read what I wrote before calling me a liar.

I'm not sure why it bugs you so much. Seriously. Who cares if people call it an autoimmune and you believe it isn't. Does it hurt you? Does it alter your treatment? Why does it matter? It doesn't bother me one bit that you believe it's not autoimmune. I just provided a link that contradicted yours. Don't take it so personally.


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## suschex (Oct 30, 2011)

Kiny - I do not know and have never had communication with chrisnsteph1022.  I am not sure why you decided to start this thread but I do know your tone is not one of kindness or wanting to educate.  If you have a bone to pick then so be it but don't take it out here on so many people who are struggling to just get through minute by minute.  I am so sorry that you must be hurting and feeling so very angry and hope you can find something more soothing than attacking others.  Respect is just a must on this forum!


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## kiny (Oct 30, 2011)

suschex said:


> I am so sorry that you must be hurting and feeling so very angry and hope you can find something more soothing than attacking others.


please don't troll, you have an opinion about the subject go on right ahead I'll listen


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## kiny (Oct 30, 2011)

chrisnsteph1022 said:


> Does it alter your treatment?



It defines the treatment of everyone who has crohn's. The difference between our regular immune reacting against a pathogen and the adaptive immune system mistakingly attacking is of humongous importance to how someone treats a patient.

For me it matters a lot, if it matters for me with crohn's, it should matter for you too.


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## Ekaj (Oct 30, 2011)

*Interesting read*

Thanks for posting. Do you have a link to the full article? Looks like a good one.

Best, Ekaj


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## kiny (Oct 30, 2011)

Ekaj said:


> Thanks for posting. Do you have a link to the full article? Looks like a good one.
> 
> Best, Ekaj


Forgot was on library PC. I will look for a full article if I can, Medscape usually tends to post them in full.

At least just as interesting is this from Behr (same author): http://www.youtube.com/watch?v=N8AYhnLkf9A


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## notfullyfathomed (Oct 30, 2011)

This is an interesting article, but parts of it were over my head -- I don't know nearly enough about how the immune system works to be able to evaluate what they say!

To clarify, Behr says that Crohn's is "Emerging genetic and immunological data suggest that Crohn’s disease is not an autoimmune disorder, and represents instead either an immune deﬁciency or a secondary immune response to altered  intestinal microbiota."

Also judging by the long list of qualifications he gives at the beginning of his video, he has probably ruffled a few feathers among IBD researchers. I'd expect there were a couple of comments published afterwards in The Lancet that would be interesting to read.


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## David (Oct 30, 2011)

Kiny,

What you're posting is very fascinating but PLEASE improve your tone.  We're all on the same team!


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## Emily (Oct 30, 2011)

good lord kiny. why are you on the attack? The tone you take weakens what you are trying to say. Many, many people believe it is autoimmune just as many believe it is genetic. To my knowledge, they still don't know exactly everything about Crohn's, so much of it is speculation, but for now it is widely accepted that it is autoimmune. 
As others have said, why are you getting into semantics. Who cares? How does using this one word to describe Crohn's affect you so much? Many aspects of Crohn's are unclear still.


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## EmAitch88 (Oct 31, 2011)

if it's not autoimmune, why do doctors put some of us (me included) on immunosuppressants? i know medical people aren't always up to date on a lot of stuff (that's awesome, isn't it?) but i sure hope they know a lot more than a few articles online.


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## D Bergy (Oct 31, 2011)

What the exact cause of the disease is, does have a bearing on how you treat it, so it is important to know on all levels.

My choice of treatment has a direct relationship to what I think the cause of the disease is.

For instance, my main treatment has always been Low Dose Naltrexone.  Not because it is the most used treatment, or because my gastro recommended it.  (He would not even write a prescription for it).  But because I think it addresses the problem of a weak or dysfunctional immune system unlike other medications.

If I have a pathogen that is causing my disease, the last thing I want to do is make it easier for it to multiply, by knocking down my immune response further.  I just do not see that as a likely way of producing good long term results.  But that is just my opinion, and I could be wrong like anyone else.

I also take vitamin D-3 to further strengthen the immune system.

I am taking and tapering off of Prednisone right now, and not taking LDN due to an infection I recently got rid of that caused me Crohn's like pain.  In that case I had no choice but to keep the immune system from responding, until I could identify and eliminate the infection.  The pain and swelling was too great to leave as it was.  So I did what I had to for the short term, even though it was not what I wanted to do. 

Immune suppressants are an effective treatment for Crohn's for many people, both for autoimmune disease and unrelated conditions.  They just prevent the body from responding to what I beleive is an infection.  

If it turns out to be an actual autoimmune disease, the difference is it is preventing the body from attacking your own body.  This is actually a more speculative theory in my opinion, since pathogens almost always are involved with diseases, one way or another.

The difference would be if a pathogen is responsible for the disease, getting rid of the pathogen would be far better than suppressing symptoms.  One would be a cure the other a life long treatment that might allow the pathogen to increase, making the long term results worse as time goes on.

One example of this is the disease my wife used to have, which is Lyme Disease.  You would be surprised how many people with Lyme Disease end up with an autoimmune disease as a result of the Lyme bacteria weakening the immune response. 

A lot of them lose the autoimmune disease if they can reduce the Lyme bacteria through treatment.  Crohn's is only one of the autoimmune diseases I have heard of affecting these people.  Once their immune system is no longer compromised, many no longer have a problem with the autoimmune disease.  It simply goes away.

That is one case where the Borrelia Burgdorferi bacterium is directly responsible for the dysfunctional immune response, which allows the alleged autoimmune disease to develop.

These people never take immune suppressants, as it would allow the Lyme to increase by leaps and bounds.

So it is important to know the cause, because a cure and better treatments depend on it.

I just am not sure it is as simple as one cause.  I just have a good idea of what causes it in my case.

Dan


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## Gwen pippy (Oct 31, 2011)

No matter what the cause or the links, we are all here looking for friends, a shoulder to cry on, to have a laugh, some of us are scared to death of our next flare, some want only to support others enough though they are in a flare themselves and some want to educate, I for one will have all the attention and respect for those who present their findings in a caring and informative manner, we fight enough in our day to day lives to just to get by with this condition, don't let it happen here.
Good luck everyone and I hope you are all feeling well and have a good Halloween.


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## Guest9283 (Oct 31, 2011)

If it is not an auto immune disease then why do people who undergo autogulous (own stem cells) stem cell transplants stay well from 1-5 years without disease? Better yet, if Bergs theory is right, how do allogeinic (donor transplant/new immune system) transplant patients stay well/disease free for 15+ years? Wouldn't the disease get worse, because you knocked down the immune system 100% and the pathogens should be making it worse (that is if we were to go by bergs theory). Which is a good. (Im just debating here casualling with you, hope no offense is taken).

The point of the transplant would be soley based on the idea that is it an auto immune disease, and that the goal is to destroy the current immune system, and replace it with a functioning one. The rude person in the room probably didnt know this. I know Berg is probably well aware how it works.


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## Guest9283 (Oct 31, 2011)

I would like to see how to OP answers my question, before Berg does. Why do stem cell transplants work (weather it be 1-5 years, or 15+) if it were not soley an immune disease?


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## flowergirl (Oct 31, 2011)

d-bergy, correct me if i'm wrong, but isn't lyme disease therapy a lot of antibiotics? how do you know that people with lyme disease don't get autoimmune illnesses due to the antibiotic therapy killing off all their bacteria, such that the body has nothing to fight except itself?

causation.. correlation...


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## D Bergy (Oct 31, 2011)

Stem cell transplant could work for any type of immune system problem regardless of what it is.  There is no doubt in my mind that my immune system does notwork normally.  

What I doubt is that it is attacking my own tissue without a pathogen that is in that tissue.  I think the reason the bacteria is there to begin with is because my immune system cannot effectively remove it as a normal persons could.

If it is the MAP bacteria, and I think it is, we are all exposed to it sooner or later, but only people with this dysfunctional immune system will not be able to kill it.  he body will try, but the result is only chronic inflammation.

Inflammation is part of the immune systems response to a pathogen, but in a normal person it is short lived, like getting the Flu.  Once the job is done, the inflammation is gone along with the pathogen.  We are just stuck in the inflammation phase with no resolution.

For instance, my symptoms from just a few weeks ago were directly caused by Mycoplasma Pneumonia.  My nurse practitioner, and myself, knew this was not a normal flare, just from experience.  Chronic inflammation and swelling again with no resolution.  

A lesser practitioner would have just wrote it off as a Crohn's symptom, and it was similar but far more pain full than my prior flare.  In the end, I figured out what pathogen it was, thanks to a lung infection, and an alternative treatment that told me what it was.  Zithromax took care of it quickly, but how many people right now are laying on their back with this infection that are not getting any helpful treatment?

I am not saying this is a cause of Crohn's but it easily could be mistaken for Crohn's.  Mycoplasma does not often settle in the guts, so no one looks for it.  Due to my funky immune system I was one of the few people that have this settle in the guts.

H-Pylori is another infection I had that gave me some Crohn's like symptoms.  At least two negative tests said I did not have it.  I treated myself and got rid of the infection I was not supposed to have, and the symptoms that went with it.  No reoccurance in years.

One other one that I think was a strain of E-Coli gave me Crohn's symptoms in the Ilium.  I got rid of that also, and this is connected to a cause of Crohn's by some researchers.  It is thought that it works hand in hand with the MAP bacteria and can cause symptoms on its own.

Three different infections, all causing symptoms that are associated with Crohn's, but not all are Crohn's related.

I think a majority of the cases of Crohn's that do not involve these other pathogens that cause symptoms like Crohn's, but are not, are from the MAP bacteria.

I think the crux of the disease is the faulty immune system.
But is the faulty immune system caused by another pathogen or is it genetic, or is it both?  There are many pathogens that affect the immune system.  Even vaccinations mess with the immune system, so there could be any number of reasons our immune system is messed up. 

Most people do use antibiotics for Lyme Disease.  They use them long term for chronic infections.  The people that get the autoimmune problems get them while treating, usually when they are already quite sick with the disease.

As they improve, and the bacteria is reduced, the autoimmune problems go away although they are still using antibiotics.  It is exceptionally difficult to totally eliminate a chronic Lyme infection, so these people can be on antibiotics for years.

There are also alternative treatments that do not use antibiotics, and the results are the same.  My wife was never correctly diagnosed, so this is the route we went.

Stem cell treatment, may end up being one treatment that can actually correct the underlying cause of the disease.  I am somewhat skeptical, because so many of these stem cell experiments have not produced the expected results.

It is well worth trying though.  I am all for trying things.  I never learned anything sitting on my hands.

Dan


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## Guest9283 (Oct 31, 2011)

Great answer and theory Dan. Thanks for taking the time to write it all out. I'm almost convinced its autoimmune/genetic. Sure other pathogens could trigger the disease possibly. I'm glad you explained it, im on the same idea myself. Thats pretty neat that you are so pro active. We could all learn a thing or 2 from you.

Yeah it was a pretty big let down when the numbers for the autogulous results were released. Up until that point, I was under the impression that the 5 year non relapse rate was double of what it now is. The real hope and grail has always been placed on cord blood donor stem cells though. Not ones own stem cells. The only reason Burt took the route of the autogulous (own blood) transplant first, is because at the time it was a lot safer over the donor cord cells/blood. The risk/reward ratio was better of the 2 at the time. The reason it was concidered more dangerous was because Host vs Graft is not possible side effect of the autogulous. It is possible with the allogeinic. However now, Burt and them have altered and tailored the procedure to totally eliminate the host vs Graft possibility in the donor sct. We have now seen Effdee, a girl who i'll keep unamed, and gentlemen 2 years ago successfully do the donor cord transplant without getting h vs g. As well as the 4 others that stayed disease/crohns free for 15 years. The problem with the autogulous transplant that i had, is that they cannot kill the last b lymphacite with the procedure, as one was getting his own immune system back. The cord blood stem cells would be an entire new immune system of someone else who has been tested thoroughly to make sure they match and are clean. It's a bit early for me to call it a cure, but it certainly has everything going for it. There really is no reason to believe it wont work, yet. So bad news is i'll probably relapse statictically in the next 1-2 years from the autogulous sct. Good news is I already know my next move.


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## Guest9283 (Oct 31, 2011)

Sorry I also want to add that any stem cell treatment that does not encompass the use of chemo is useless. Well I shouldn't say useless, but will lack in results towards the goal of sustained remission...think of it as a really great anti-inflammatory, when not used with chemo. May repair tissue, but stop the disease it will not. Osiris(sp) falls under this cataglory. To get the full effect you need the full treatment.


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## Crohn's 35 (Oct 31, 2011)

http://www.crohnsforum.com/showthread.php?t=12769&highlight=Autoimmune
This was posted from one of the guys I respect most.  He no longer is active but I remember seeing this.

Personally I couldn't care less, if the sky is purple...then it is.


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## Ekaj (Oct 31, 2011)

*we need hope*

This is certainly a difficult condition. We cannot trust that medical research is being done for anything but profit. Lets try to be as sensitive and polite to one another as possible.


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## Mark in Seattle (Jul 31, 2012)

I just came across Behr's youtube presentation.  Good stuff, good food for thought, it's nice to find a video like this where a researcher sort of lays out some thoughts methodically.

Behr tends to believe that Crohn's is a disease of "immunodeficiency", not a disease of "autoimmune".  He makes this point very clearly in his presentation.  kiny already posted the link, but here it is again for anyone who wants to watch it.  In any case, "immunodeficiency" apparently gets Behr's vote, but that's just his personal guess, based on data that he says is supported by:

1) analogy (C.G.D. [Chronic Granulomatous Disease])
2) immunological data (immunological experiments performed on CD patients & on controls to test how well neutrophils clear bacteria from infected sites)
3) genetic data (NOD2 genetic research, etc.)

So Behr tends to embrace immunodeficiency over autoimmunity.  He lays out this aspect of his thoughts in the first 2 modules, each 9:59 in length.  I found it very interesting.  The whole thing is about an hour long.  He's got another video out there from 2008 as well, where he talks about MAP.

He also speculates about a possible inverse relation to TB infection, as though TB infection is perhaps protective against CD and vice versa.  

I also note in the final module, during Q&A he mentions that the gradient seen on maps is not "north/south" but "tropical/temperate".

All in all, a very pleasant way to spend an hour I thought.

http://www.youtube.com/watch?v=N8AYhnLkf9A&feature=relmfu


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## ZM1019 (Aug 1, 2012)

I think the pertinent thing to remember is that these are all hypothesis and nothing is proven yet.  I've been down this road before with other issues and you get treated one way only to find out years later that it had absolutely nothing to do with the root cause and was only a guess at how to treat the symptoms.  A lot of years and a lot of harm later, they found out that the treatment was hypothesis based on positive findings for some people with specific symptoms and that in fact it caused other people with different symptoms harm.  Meanwhile, it did nothing to fix the real issue which wasn't even known and still isn't some 40 years on.

Hypothesis are interesting but we have to remember that they are only hypothesis and issues like Crohn's are incredibly hard because they have to separate the symptoms from the causes, which can in fact be multiple.

My own feeling is read/listen to all hypothesis and investigate and weigh carefully all treatment methods.  That is how I proceed.

Also, if the NIH says Crohn's is autoimmune, that has an effect on all of us in multitudes of ways, not just treatment.  It wouldn't be the first time an issue is labeled wrong until more research sways them another way.  Just remember, theories are only what is known right now.  Tomorrow the theory on any condition can change based on new findings.


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## Moe. (Aug 1, 2012)

One of the causative agents is MAP.
Causes the same type of inflammation in cows. (do we agree?)

You may or may not agree. The immune response is to send out macrophages to deal with the pathogen, consume it for breakfast, and poo it out (very simple). With MAP the macrophage consumes it, but MAP is able to replicate inside the macrophage and then kill it(not so simple).

Excess TNF is then produced in the gut by the cytokines. Due to the immune system trying to kill MAP or any other associated Pathogens. So the Immune system is weakened due to this bacteria. 

"Recent findings indicate that activated T lymphocytes, showing restricted T-cell receptor repertoire and a Th1-like profile of cytokine production, are responsible for macrophage activation and release of inflammatory cytokines, toxic oxygen metabolites and nitric oxide, which initiate and maintain the transmural intestinal inflammation in Crohn's disease. A critical event in the promotion of Th1-type response at gut level may involve up-regulation of IL-12 production and the breakdown of tolerance against the intestinal flora".
(cant add the source am new user)

Which then leads to the fact that yes it is one bad ass problem, but can be solved if people (governments) really cared. Things that work
-SCD/low Carb Diets (Remove Dairy except for yoghurt and carbs out of the system)
-Anti-Map Treatments (destroys the bacteria) we do not know how much, but S.Naser and Hermon-Taylor will bring something to the table soon.
-Stem Cell therapy (The immune system returns to normal, it can actually remove the bacteria). 
-Humira/Remicade removes excess TNF. 

So is it an auto-immune disease? Maybe if you want to look at it that. Ill always disagree. 

Every problem has a solution, therefore Every disease has a cure. 
Do you remember the days H.Polyri was caused by stress. I Kid you not stress causing stomach ULCERS.


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## SkinnyNinny (Aug 1, 2012)

I see the distinction between the two labels in the original argument, and it reminds me of my last visit to my gastro. To me the experience was frustrating and illustrates the narrow  mindset in the vast majority of practicioners in the medical profession - a reminder for me again that I might as well be a faceless lump of flesh with a big label over my face that says 'Crohn's Disease' to remind the doctor what my treatment should be.

Basically, every 'negative' physical symptom I have ever got, is summarized as proof of my 'Crohn's' acting up, as though it was the only thing going on in my body. As though there weren't a whole host of other activities going on that were totally unrelated to this poorly defined disease. For example, 20 years ago I had a resection and over time one of the small intestine looped up and connected itself to my duodenum and created a hole. They had to go in and fix it, and I got an ileostomy. My surgeon said when the original resection was done 20 years ago stuffed it all back in and it was a mess, like kinked water hose. Well the gastro said, there was 'active Crohn's' simply because the surgeon noted inflamed tissue at the site where the intestine connected to the duodenum. Well duh! So, that means every little inflammation is evidence of Crohn's - to my doctor at least. Since the last operation I have had NO PAIN, and no symptoms. Yet the gastro wants to put me on Humira etc. 

Sorry, this is off topic. But my point is that I disagree with using either label. Why get hung up on it? If the cause is within my control then I can be pro-active and do something about it. If its genetic, then not so much and I may as well give up and let nature take its course.

However, since all the stats show increased incidence of this 'disease' in developed countries, I am tempted to emulate conditions that exist in those countries where it has yet to appear. Namely, cleanliness. Proliferation of bacteria, absence of sterile cleanliness. Fact is, we have more bacteria in our bodies than cells. The significance is not lost on me. Also, when I was severely anemic I craved eating earth! Clay to be exact. It's a good source of bacteria. It won't cure a physical hole in the intestine or a damaged duodenum but it will re-populate the gut with good bacteria.

In any case, I'm quite happy with my overactive immune system. No colds, flu, infections. No way am I going to trade in some pain and diarrhea for risk of major infection or disease. I don't care what you call it, it's all the same to me.

Just my 2 cents...


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## Tenacity (Aug 1, 2012)

Very interesting concept Mark - thanks for posting.  I am half way through watching it, and I find it fascinating, and his research results seems very plausible.

I was just wondering though, and would appreciate everyone's input here, if this theory is true, why would the immunosuppresant class of drugs like 6MP and Methotrexate improve Crohn's symptoms - as it would further weaken the immune system, allowing the infectious agent to multiply and cause further damage.  Instead, why would it help Crohn's symptoms when we weaken the immune system further.

If Crohn's is caused by various infectious agents like MAP, E Coli, H Pylori infecting us, and then our mutation of the NOD2 gene not being able to recognize it, and our weak immune system not being able to destroy the infection, why would treatments that weaken our immune system help?

That's the only part that puzzles me and I'm trying to figure out a reason why.


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## kiny (Aug 1, 2012)

Tenacity said:


> Very interesting concept Mark - thanks for posting.  I am half way through watching it, and I find it fascinating, and his research results seems very plausible.
> 
> I was just wondering though, and would appreciate everyone's input here, if this theory is true, why would the immunosuppresant class of drugs like 6MP and Methotrexate improve Crohn's symptoms - as it would further weaken the immune system, allowing the infectious agent to multiply and cause further damage.  Instead, why would it help Crohn's symptoms when we weaken the immune system further (and in stem cell transplants, we actually destroy the immune system).
> 
> ...


I wasn't really nice in the thread back then, but someone bumped it so, now I bumped it myself.

MAP or invasive E Coli are not regular bacteria, MAP especially is a really smart bacteria and doesn't behave at all like other bacteria. It has really sophisticated ways to steal iron, it is able to prevent apoptosis and it hides inside macrophages, which means normal antibiotics like Flagyl and rifaximin can't get to it, because they are not macrophage penetrating, if MAP is involved, they could actually end up making the disease worse, because they are predisposing you for antibiotics resistance the moment they do use macrophage penetrating antibiotics. Clarithromycin and cipro for example are macrophage penetrating. That's why they use them instead of normal antibiotics, because of their ability to get to the pathogen.

It's also incredibly hard to detect, you can rarely see it under microscope, it takes months to culture, the best way is DNA testing with PCR. And it behaves differently depending on the host, in humans it is in spheroplast form and there is more than one strain of MAP, which explains why some couldn't find MAP at all for years.

As far as your questions, 6MP and TNF-blockers have not the effect on MAP as you would think. Certain TNF blockers are able to induce apoptosis, for some reason TNF-blockers and 6MP halt MAP and in the case of infliximab it lowers MAP, at least in the short term.

http://www.johnes.org/handouts/files/Shin_6MP.pdf

http://www.ecco-jccjournal.org/article/S1873-9946%2812%2900017-7/abstract

That doesn't mean 6MP or TNF blockers are a good way to stop a pathogen though, it's just that they see it's stopping MAP (maybe on an insignificant level though), they see this in almost all successful crohn medications. But coming off the medication and the long term use of medication might actually end up helping MAP, but in the short term, immunosuppressants don't seem to be beneficial to MAP, for whatever reason, it's detrimental to MAP. Might be the same with invasive E Coli, I dunno.

Immune modulators like 6MP and TNF blockers could be making the disease both better and worse, the paradox that an immunesuppressant might actually stop a pathogen in the short term but help in the long term, is I think part of the reason gastros have had a hard time in the past wrapping their head around the increased MAP and invasive E Coli they find, they have blamed it on increased permeability and side effects of the disease instead of considering it's caustative.

Not all mycobacteria respond like that, some do benefit from TNF blockers, like tuberculosis, that's why they do that test under your skin, mantoux test, because TNF blockers are known to help latent tuberculosis.

As far as overreactive immune system some people use, that's not what is actually going on at all. People with crohn are immune deficient, very simple tests have shown this. Inject a harmless pathogen in a person with crohn, now do the same thing in a control, the person with crohn will take much longer to wipe out the pathogen than the control. NOD2 and ATG16L1 mutations predispose people with a weakened immune response. Our adaptive immune system might try to overcompensate, but that doesn't mean we have an overreactive immune system, we might be overcompensating our innate immune system or both because we are unable to clear the bacteria.

As far as our body attacking "harmless bacteria", I would like to know which mythical bacteria those are that suddenly invoke an immune response. MAP and invasive E Coli are anything but harmless. I have a real hard time believing that our body just one day decided to attack our own intestinal flora for no reason at all, it makes no sense and not a single study actually shows this is what is going on. That isn't stopping sites and doctors from making stuff up to explain the disease though.


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## pb (Aug 1, 2012)

I've never heard of autoinflammatory and I've been battling CD for 21 yrs now....not saying I know IBD inside and out, but autoinflammatory has never been used in any of the research articles I've gotten from the CCFC, nor have I seen it being used in any online research.

This is what I do know;

According to researchers IBD is an inflammatory disease that causes the immune system to function improperly and ends up attacking harmless bacteria (that the immune system believes is actually harmful bacteria) that are found in the GI tract.

Also according to researchers, there is a gene located on chromosome 5 that normally produces a protein that sits on the cell surface and controls movemement of specific substances in and out of the cell.  When altered, the gene produces a protein that functions improperly allowing toxins increased entry into the cell...this gene is primarily observed in CD patients.  This is the genetic part of crohn's disease, the nature of having crohn's disease means that your immune system functions improperly, unable to recognize harmless bacteria as just that so it attacks the harmless bacteria and therefore causes inflammation.


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## Mark in Seattle (Aug 1, 2012)

Tenacity, I'm not real savvy on the immune system or the terminology, but my rudimentary understanding is that because our innate immune system (first line of defense) is defective, the invaders are able to take up residence within our cells (within our macrophages actually, which are the cells which are supposed to capture invaders and then self-destruct, killing the invader in the process and showing it's dna to our immune system so that said invaders will be quickly recognized in the future).  Since this process does not work, our adaptive (I think) immune system goes into action sending in the heavy artillery like TNF-alpha and possibly some other inflammatory chemicals which are aimed at killing the invader.  All of the tnf-alpha is painful to our intestinal tissues, and thus immunosuppressants & tnf-alpha-inhibitors put a stop to the barrage of chemicals inflicted on our tissues by our immune system.  Now I've heard it said that when the immune system is tamped down like this, our tissues can recover and heal.  I've also heard it said, as Dr. Behr mentions in the video, that tnf-alpha-inhibitors can actually induce apoptosis of the macrophages which harbor the MAP, and he further mentions that when tnf-alpha inhibitors were first created, they were created with killing infection in mind, not stopping inflammation.  So it seems that it's not entirely clear what percentage of the ameliorating effects that immune suppressors/modulators give, stem from simply stopping the painful barrage of self-inflicted chemicals vs. eradication of MAP.  But this is the first I've heard of the MAP stuff.  Historically I'd heard simply that the immune drugs just stop the painful chemicals from being self-inflicted.


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## ZM1019 (Aug 1, 2012)

So the real question is - if this is so well known (I'm finding articles back to 1997), how are they testing for it and do they consistently test for it (MAP).

I had so many tests I can't even tell you (including several biopsies) and the GI said no trace of any kind of infection.  I do have messed up genes and I am creating at least two antibodies at high levels.  So how would I ever know?  Of course why I'm asking, I don't know since I can't take any form of mycin or Cipro.  It appears I'm out of luck if MAP is the problem.

And part of me has a hard time believing I can't fight off infections or I'm not effective at it since I've had to do that for years on my own.  I'm allergic to most antibiotics and doctors and dentists are extremely reluctant to give me the remaining ones that I can take based on my history of having a sudden and powerful allergic reaction after a time (not that those antibiotics are very useful anyway).  They've left me to my own devices for years with the instruction that if it turns deadly, they'll try something.  

Last as for MAP, I would think I'd have been exposed to that as a kid since I grew up in farm country and drank milk by the gallons, not to mention was around cows.  I even had unpasteurized milk strained through cheesecloth.  Yet I had no issues when I was young at all.  I had no issues until I was over 50 and not drinking milk or eating beef at the time. I'm just wondering here - wouldn't this have shown up a long time ago at least in the form of Crohn's?


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## kiny (Aug 1, 2012)

ZM1019 said:


> So the real question is - if this is so well known (I'm finding articles back to 1997), how are they testing for it and do they consistently test for it (MAP).
> 
> I had so many tests I can't even tell you (including several biopsies) and the GI said no trace of any kind of infection.  I do have messed up genes and I am creating at least two antibodies at high levels.  So how would I ever know?  Of course why I'm asking, I don't know since I can't take any form of mycin or Cipro.  It appears I'm out of luck if MAP is the problem.
> 
> ...


As far as testing, this is *the * biggest problem right now related to crohn. Biopsies / serum should be tested for invasive E Coli and for MAP, because for one it's irresponsible not to at this point, and second of all clinics are using Flagyl and rifaximin. Flagyl & rifaximin (and likely a bunch of other I don't know) is predisposing people with macrophage-penetrating antibiotics resistance (this resistance is not seen in Amoxicilline). If the link between Crohn and MAP / E Coli becomes caustative I am going to sue the pants of some people, it is malpractice to ignore facts. The facts are there, MAP and invasive E Coli are found in much higher numbers than in controls. 

Even if it isn't caustative, if you have dying cows, goats, buffalos, monkeys, and basically every animal infected who is dying from symptoms extremely similar to crohn, and they test people and actually find in the majority that they have MAP, and then you as a gastro or doctor decide to ignore this, then you are liable for malpractice. This same thing happened with Helicobacter,  doctors ignored this, and they all became liable for malpractice, if E Coli or MAP is caustative it is the exact same scenario.

As far as your questions of drinking milk / beef. It might be highly dependent on your intake and ability to clear the bacteria. If you drink a glass of milk for years with 100 MAP (just throwing out a number), this might cause no issues at all. But if you one day eat a piece of steak from a cow diagnosed with Johne's Disease that was slaughtered because it was dying (and make no mistake, this is how farmers operate) it might be far more detrimental to you than all those glasses of milk you consumed.


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## ZM1019 (Aug 1, 2012)

I'm going to ask my GI if it was included in the tests when I see her next.

I've never had Flagyl or rifaximin.  I'm sure about that.  I know what Flagyl is and why they use it.  Amoxicillin, while not a problem for this, is also something I've never had because I can't take any cillin forms.

I don't eat beef and I haven't for years and years.  If I got it the most likely source would be the water supply or cheese/ice cream.  

Trust me, you don't need to explain that they slaughter sick cows.  I grew up around all of that.  When I grew up, they were dumping DDT on everything for pest control and we all drank well water and ate the food grown in that ground.  If you knew what they did to your food, you wouldn't eat anything.  It's disgusting.  The only thing that surprises me is that I would get this now.  Statistically my odds had to be much greater back then.

I'm just hoping that isn't it for me since that would not be a good outcome.


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## kiny (Aug 1, 2012)

ZM1019 said:


> I'm going to ask my GI if it was included in the tests when I see her next.


I can already tell you it wasn't, the number of clinics testing for MAP or E Coli is extremely small. There is an incomprehensible stance towards relating crohn to infections with many GI, an I hope that when there is a link, they all get what they deserve for their stubbornness to educate themselves. Having a difference of opinion is one thing, but ignoring studies and sitting in an ivory tower putting your fingers in your ears makes you liable.

If testing for infection was an extremely expensive procedure I would change my stance on this, but it isn't, and the only reason it's not being done is pure stubbornness and pure ignorance on the part of some GI, and that's being extremely nice.

JHT talks about it here http://www.youtube.com/watch?v=GPO63UWZgy4


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## kiny (Aug 1, 2012)

If people are really interested in this, here is a recent study linking MAP to T1D:

(to put this into perspective, people with crohn are more likely to get diabetes)

http://www.hindawi.com/journals/cdi/2012/785262/
_
"We demonstrated for the first time that Mycobacterium avium subsp. paratuberculosis (MAP) is present at the onset of T1D in a cohort of italian patients outside Sardinia. This raises some concerns regarding the diffusion of MAP and its possible involvement in triggering T1D."_

With enough pressure, testing will begin, but for that to happen, some people need to lower their shield and stubbornness.

If it's not MAP then it's not, but if it is and GI, big pharma and some advocacy groups for farmers are purposely trying to keep the lid on this kettle then they are irresponsible towards their patients.


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## pb (Aug 1, 2012)

A review of the controversy from the clinician's perspective on Mycobacterium avium paratuberculosis and the etiology of Crohn's disease article can be found here...

http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.6431045/k.E3D8/IBD_Watch.htm

Second last article in the long list of them...for some reason my puter won't open the abstract link.

And MAP is found in soil and water as well, not just directly from cows.


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## Snoflayk505 (Aug 1, 2012)

This thread has sparked my interest. I still remember the first day I felt something was a little off went I went to the bathroom. It was about a month after I took some antibiotics for a tooth. 
From day one I had always thought the antibiotics had SOMEthing to do with me getting Crohn's Disease. Maybe people with the Crohn's gene are the ones whos immune systems are in danger of being compromised by something like antibiotics, environmental trigger, etc...
I NEVER got sick when I was younger. Ever since I got Crohn's I get sick now, and when I get sick it's so so bad and takes me forever to get better. I hear this from soooooo many people with Crohn's that they NEVER got sick before they were diagnosed. 

I feel like maybe it's possible the antibiotics damaged my immune system somehow. Since my recent success with diet I feel like maybe my body is unable to fight off the bacteria in foods like carbs and sugars because of my damaged immune system. SO if I avoid those foods, I stay symptom free but still high risk. So if I can eliminate the bacteria causing foods and strengthen my immune system, perhaps I can build my body back up and stay symptom free? 
I never considered they were wrong about the immune system, this is interesting and worth testing. It's totally possible because they still don't know what causes Crohn's. 

I hope I didn't skip over too many of the rude posts and miss the whole point of this thread lol. If anything I think I might talk to my doc and try to strengthen my immune system after success in being symptom free for a year or so from the SCD diet. I'll let you all know what happens. Shoot i'll try anything =P

Going to watch this youtube video now.


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## Mountaingem (Aug 1, 2012)

Wikipedia has an interesting article on autoimmune disease here: http://en.wikipedia.org/wiki/Autoimmune_disease

Crohn's is labeled here as an autoimmune disease, and also lists the antibodies involved. It has links to the sources quoted; I found it a bit more user-friendly than some medical journals. Maybe that's just me, IDK. :confused2:

Personally in the 20 years since my diagnosis I've never had a doctor tell me Crohn's disease _wasn't _an autoimmune disease; it may be the one thing they all agreed on. 

I've had GI docs and immunoloists from Johns Hopkins, USC Medical, and UCLA-one of my past GI docs has two doctorates from USC-one in GI, the other in research for autoimmune pathology.

Who knows-in 10 years the doctors might change their minds-that's why I wouldn't get hung up on labels. 

It certainly doesn't make any difference in how Crohn's has effected my life and health.


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## kiny (Aug 1, 2012)

Mountaingem said:


> Wikipedia has an interesting article on autoimmune disease here: http://en.wikipedia.org/wiki/Autoimmune_disease
> 
> Crohn's is labeled here as an autoimmune disease, and also lists the antibodies involved. It has links to the sources quoted; I found it a bit more user-friendly than some medical journals. Maybe that's just me, IDK. :confused2:
> 
> ...


Let me ask you, what does autoimmune mean to you in relationship to crohn.


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## kiny (Aug 1, 2012)

here's some videos that shows you some insight if you don't like reading studies:

http://www.youtube.com/watch?v=HWuoVJP-wcU

http://www.youtube.com/watch?v=vCVt7eZNqhk&feature=relmfu

into the mythical autoimmune theory (which still has no paper to date that ever showed it is that)

 let those people from John Hopkins make an account here and explain to us why it is an autoimmune disease, because you're going to need a lot of help trying to explain why and how our own immune system attacks our own intestine for no apparent reason without any studies to back you up, on the other hand I will have no problem whatsoever to show studies that invasive E Coli or MAP are involved

the reason for you why it's easier to link a Wikipedia page (mind you, you skipped the wikipedia page about crohn's disease itself which shows with sources why it's not autoimmune) to show it's autoimmune, is because you won't find 1 study linking the immune response to our own non-pathogenic intestinal flora, not 1


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## tots (Aug 1, 2012)

I cant believe in our society that someone is "holding out" on the true cause and treatment of Crohns. First of all there is just to much money for the person/people
who develops the treatment. Why not the correct treatment instead of the incorrect 
treatment? 

I never took antibiotics as a kid and I had Crohns as a kid. 


Lauren


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## kiny (Aug 1, 2012)

tots said:


> I never took antibiotics as a kid and I had Crohns as a kid.


what do you mean by that when you say that


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## Jennifer (Aug 2, 2012)

kiny said:


> what do you mean by that when you say that


That would mean they were diagnosed with Crohn's before they ever took any antibiotics. 


Also, please, its pronounced "Crohn's." It was named after Dr. Burrill B. Crohn hence why its called "Crohn's" disease. When you say crohn, all you're doing is saying his last name without a capitol letter.


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## 2thFairy (Aug 2, 2012)

Either Crohn's (by itself) or Crohn disease (without the 's) is correct, but you are correct Crabby, Crohn by itself is nothing but the man's name.


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## kiny (Aug 2, 2012)

Crabby said:


> Also, please, its pronounced "Crohn's." It was named after Dr. Burrill B. Crohn hence why its called "Crohn's" disease. When you say crohn, all you're doing is saying his last name without a capitol letter.


it's called _crohn_ here, I got used to saying crohn without the s, don't know why this matters, I think most people understand what I mean


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## Tenacity (Aug 2, 2012)

I think what Tots meant when he said he never took anti-biotics as a kid - was in response to what Snoflaky said in her post.  She stated that she took anti-biotics as a kid and believed it messed up her immune system.

Kiny - I am not able to view any of your youtube posts - not sure if anyone else can.


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## kiny (Aug 2, 2012)

Tenacity said:


> Kiny - I am not able to view any of your youtube posts - not sure if anyone else can.


no idea why, can you say which one in my post or quote me somewhere, I linked a few by now


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## pb (Aug 2, 2012)

kiny,

 The thing is, why and how our immune system attacks our intestines is because our immune systems are compromised and not functioning properly just as the gene on chromosome 5 isn't functioning properly for us CDers either, therefore based on these facts our disease's nature is to attack the intestines...just like with other autoimmune diseases that cause inflammation like Lupus for example (inflammation that happens to pop up and attack specific organs) but with CD it's the GI tract that it happens to attack...and bacteria(s) as well as hormones also play a huge role in the puzzle of IBD...

You may just be looking for a simple solution for the cause of IBD, and there very well could be, but the facts are there are many pieces to the puzzle when it comes to IBD specifically and there are even differences between UC and CD as far as bacterias and genes that are involved with each of those IBD's.

Triggers are a key part of having an IBD....you can be predisposed to getting an IBD but if it's not triggered, you won't get sick...and there are many suspected environmental triggers for IBD.  Smoking is one known trigger specifically for CD, doesn't mean it's every CDers trigger but smoking (including second-hand smoke) does weaken the immune system..that's just one example.

Making one's immune system stronger, won't necessarily make your IBD go away either...researchers have argued back and forth for decades as to whether the immune system becomes over active or under active, because there are so many variables, they decided to bascially call it what it is, "malfunctioning immune system" or "altered immune system", it simply isn't working properly but not necessarily because it's either over or under active.

It's called Crohn's disease, apostrophe included because it's specficially named after Dr. Burrill Crohn, he discovered the disease and therefore it was named after him which proper grammar calls for an apostrophe "s".


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## 2thFairy (Aug 2, 2012)

As a medical transcriptionist, the new rule is to drop the 's if the name is followed by the word "disease," i.e., Alzheimer disease or Crohn disease, but if the name is standing alone, the 's is applied, Alzheimer's or Crohn's.


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## kiny (Aug 2, 2012)

pb said:


> kiny,
> 
> The thing is, why and how our immune system attacks our intestines is because our immune systems are compromised and not functioning properly just as the gene on chromosome 5 isn't functioning properly for us CDers either, therefore based on these facts our disease's nature is to attack the intestines...just like with other autoimmune diseases that cause inflammation like Lupus for example (inflammation that happens to pop up and attack specific organs) but with CD it's the GI tract that it happens to attack...and bacteria(s) as well as hormones also play a huge role in the puzzle of IBD...


Right, you can't start lumping these things together. That's the whole problem biologists have with GI who hop from assumption to assumption.

A disregulated immune system (which I'm not arguing against, quite the opposite), does not indicate it "attacks our intestine", that's a very loosely indicated term.

Inflammation or ulcers or immune disregulation does not in any way indicate autoimmune disease, it can, but you can't jump to that conclusion without proof, and sadly for the people who say that, there is no proof.

Inflammation, ulcers, immune disregulation is also implicated in infections, and there are proof of that.

If someone doesn't want to make that distinction then they should stop talking about the cause of crohn altogether, because you can't reasonably argue with someone who just lumps two completely different things together.


I can't argue with people who say autoimmune, bacteria, immune system, attacks own intestine, stress, attacks own flora, attacks non-pathogenic bacteria, granuloma reaction unrelated, related bla bla bla, and they all lump these things together and say it doesn't matter and no one knows what crohn is, honestly, jesus christ, they are totally different things, and some people just lump them all together as if the disease has 10 different causalities.

Another reason I don't like autoimmune is because people behind the theory from crohn autoimmune have been doing just that, they are starting to lump 10 different things together under the autoimmune umbrella, at first it was attacking the own intestine, then it was attacking own flora, now they added "environmental factors", basically they have no clue what they are on about, and every site has been perpetuating this idea of autoimmunity for years while biologists have moved on from that theory 10 years ago. It's time we drop assumptions based on 0 evidence, thank God some are doing that instead of regurgitating the same stuff because they are uniformed.

Many GI are utterly uniformed and it's disgraceful.

Saying a disease is autoimmune is easy when you give 10 definitions to it, just like saying "attacks the own intestine" is easy because that can literally mean anything and doing that implicates that you don't have to explain yourself and can defend yourself from behind the autoimmune umbrella, which is now completely meaningless in medicine.


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## Tenacity (Aug 2, 2012)

A quote from:

Paratuberculosis And Crohn's Disease: Got Milk?
by Michael Greger, MD 

The consumer movement also needs to fight to make Crohn's a reportable illness.[397] The official FDA stance that pasteurization eliminates MAP is no longer tenable and must be continuously confronted with the British retail milk studies which put an end to the pasteurization debate once and for all. An extensive Freedom of Information Act search must be initiated to unearth suppressed documents. For example, seven years ago Canada's agriculture department produced a food safety risk assessment paper concluding that the paraTB-Crohn's link was something about which to be concerned. The document, however, was stamped "Protected. Not for Distribution" and was as such buried.[398] These are the kinds of documents the consumer movement needs to get a hold of.

In Dr. Hermon-Taylor's view, "There is overwhelming evidence that we are sitting on a public health disaster of tragic proportions."[399] Europe's Scientific Committee on Animal Health and Animal Welfare, however, concluded that the currently available evidence was insufficient to confirm or disprove the theory.[400] This uncertainly should not impede the government from taking concrete steps to prevent further potential human catastrophe. If the British government had acknowledged the precautionary principle, millions of lives may have been saved. A headline in The Times sums up an inquiry into the mishandling of the mad cow affair released last year in Britain: "Lack of Proof Led to Disaster."[401]

The precautionary principal is the basis for most European environmental law and is playing an increasingly important role in health policies worldwide.[402] Basically it states "If one has a reasonable suspicion that something bad might be going to happen, one has an obligation to try to stop it."[403] An ounce of prevention is worth a pound of cure.


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## Patricia56 (Aug 2, 2012)

So, I've read most of your posts kiny and I don't get it. Fussing because someone calls Crohn's an autoimmune disorder seems unproductive to me. It's like arguing with someone over whether that shade of green is chartreuse or lime.

For me it distracts from your other more substantive points about MAP and such. Rants are generally unproductive and make one look like a kook. If you want to be taken seriously then you may want to be more moderate in your speech and posts.

And, I'm sorry, but unless you have been to medical school, four years of residency and up to another 8 years of post-doc training to become a gastroenterologist, I suggest that you refrain from sweeping generalizations about how welll or ill informed GI's may be. 

The GI's we work with are on the front lines doing research and treating patients. They are not "utterly uninformed". True, the general GI who has an individual practice and sees 500 patients a month, most of whom do not have IBD, is unlikely to be up on all the latest IBD research. To expect that is inappropriate.

But it seems to me that what you really meant was that many GI's don't agree with you. Those are two different things.

I have no problem disagreeing with GI's. Fired a couple of ped GI's who weren't doing a good job treating my son. But I think that GI's as a whole should be treated with respect. They have spent a lot of years learning their profession and I can guarantee you that they know a whole truckload of stuff we don't.


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## tots (Aug 2, 2012)

Kiny

Maybe the problem with getting your thoughts across here 
is that you are "arguing" "your point". (your words not mine) And you don't seem 
to be very tolerant of others view point. I don't think it's working for you very well
We come here looking for  a place to land safely  to find people who understand 
What we are going through. We have enough combative behavior
in regards to our disease in our lives. 

I also think my previous post you asked about was self explanatory. 

Lauren


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## pb (Aug 2, 2012)

The bottom line really is, if they can figure out exactly what the cause(s) are/is, they have a better chance at curing IBD...I personally think that stem cells in some form would be a likely cure for IBD and probably all other autoimmune disease.  If stem cells do end up curing IBD, then I would think that would be proof enough that IBD is infact an autoimmune disease.


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## kiny (Aug 2, 2012)

tots said:


> Kiny
> 
> Maybe the problem with getting your thoughts across here
> is that you are "arguing" "your point". (your words not mine) And you don't seem
> ...


Then don't! If you don't think I'm hopping to your liking then ignore me, all I did was reply to someone who bumped an old thread, do and believe whatever you like. I never said I was kind or good at communication or reasonable, and sorry if that's not what you want to see, I can't change what I believe in for the sake of respect, people with crohn have been doing that for years, enough for me.


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## Tenacity (Aug 2, 2012)

To keep us focused on the subject of discussion, here is another except from Dr. Greger's paper:

 The epidemic of Johne's disease, like that of mad cow disease, is an indictment of factory farming.[417] Intensive confinement systems in animal agriculture have been accused of not only threatening the global environment, but public health as well.[418] The unnatural concentration of animals raised for slaughter, for example, has led to other human tragedies including the single worst epidemic in recorded world history, the 1918 influenza pandemic.[419] In that case, the unnatural density and proximity of pigs and ducks raised for slaughter led to the deaths of upwards of 40 million people.[420]

This potential crisis is also an indictment of an industry that continues to risk public safety and a government that seems to protect business interests over those of the consumer. As Karen Meyer recently told the LA Times, "There comes a point in time where consumer health takes precedence over commercial concerns."[421]

Every few hours, another child in this country is diagnosed with Crohn's disease and may be condemned to a life of chronic suffering.[422] The balance of evidence strongly suggests a causative link between Mycobacterium paratuberculosis and Crohn's disease.423 This public health issue has been at the periphery of the dairy industry's agenda for years, a nagging concern on the back burner.[424] The consumer movement needs to move it to the front burner and needs to turn up the heat. 

End of quote.

None of us know what causes Crohn's disease, but I feel there is sufficient evidence for us to heed the warning, and take a close look at what we are eating, and how we prepare it - namely, dairy, meat, and tap water - all of which carry the MAP bacteria.


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## kiny (Aug 2, 2012)

Here's what happens to monkeys (if you want the full text, it was published in a book with papers, you can find in most online bookstores, I don't know where the second study is in full)

Our intestinal tract does not differ that much from monkeys. It's smaller compared to most species, but it's much closer to monkeys than that of say a cow.

You have to be really really really sure of yourself to say that a pathogen affecting all these animals would have no effect on humans, and to ignore the warning signs that are everywhere.

If a farmer accidentally injects a MAP vaccination for a cow in his arm, he can be sick in his arm with granuloma reaction for over 2 years.

*
Mycobacterium paratuberculosis infection in a colony of stumptail macaques (Macaca arctoides).*

http://www.ncbi.nlm.nih.gov/pubmed/3559275

"Mycobacterium paratuberculosis infection was documented in a colony of stumptail macaque monkeys (Macaca arctoides), with 29 (76%) of 38 monkeys infected and shedding organisms in feces. Thirteen deaths have occurred during the past five years. Animals without overt clinical disease were shedding as many as 2 X 10(6) colony-forming units of M. paratuberculosis/g of feces. Intestinal tissues from animals dying of this disease contained up to 10(8) colony-forming units of M. paratuberculosis/g of tissue. The clinical and pathological features of paratuberculosis in this species were comparable to those reported for paratuberculosis in ruminants and Mycobacterium avium infections in primates. By enzyme-linked immunosorbent assay, antibodies to M. paratuberculosis were found in 79%-84% of the animals. Antibodies could not be detected in six animals with clinical disease. These findings extend the natural host range of M. paratuberculosis to include nonhuman primates and add support to current suggestions that M. paratuberculosis may be pathogenic for humans."




*Molecular identification and characterization of Mycobacterium avium subspecies paratuberculosis in free living non-human primate (Rhesus macaques) from North India.*

http://www.ncbi.nlm.nih.gov/pubmed/21255839

In recent years, Mycobacterium avium subspecies paratuberculosis (MAP) has emerged as major animal pathogen with significant zoonotic concerns, worldwide. MAP infection is endemic in domestic and wild ruminant population in India. However, information on MAP infection in free ranging animal species and non human primates is limited. Present study aimed to estimate the status of MAP infection in free living Rhesus macaques suffering with multiple clinical conditions (coughing and loose stool). A total of 25 stool samples were collected from six colonies of Rhesus macaques from Mathura region (North India) and screened for the presence of MAP, using microscopic examination and IS900 PCR, directly from stool samples. PCR positive DNA samples were further genotyped using IS1311 PCR-restriction enzyme analysis. Of the 25 stool samples, 10 (40.0%) and 2 (8.0%) were positive for MAP using microscopic examination and direct IS900 PCR, respectively. IS900 PCR positive DNA samples were genotyped as 'Indian Bison type', which is a major MAP genotype infecting domestic and wild ruminant species and human beings in India. Prevalence of MAP in Rhesus macaques (Indian monkeys) was moderately high and confirmed interspecies sharing of MAP between domestic livestock and non-human primates. Presence of MAP in non-human primates, support the etiological role of MAP in inflammatory bowel disease patients. Indian monkeys may serve as model for understanding the role of non-human primates in sustenance, transmission and pathogenesis of MAP infection.


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## xardas (Aug 2, 2012)

Well, maybe this should be a different topic, but I like to give my opinion like this. 

I've always been a sugar junkie, especially after I left my parents. I liked to eat lot of candy and drink lot of coke. The amounts are really absurd, like 3 or 4 bags of haribo per week, 4 bottles of coke and i can continue on like this. I never got really fat or problems from it and I just felt great and more energy when taking this. I read on some website not only me, but more patients habitly ate more refined sugar prior to their disease. I read from my diet book that carbs give you more energy, but you want more and more, plus your body can't digest it. So a lot will stay in your gut, your immune system tries to fight this, but later on it gives up hopes. Same as you put a small airconditioning in a large hot room. It seems to not work and might even be broken, because it has to run on the edge of its capabilities. 

Now I know you're all thinking, crohn is different, it's auto-immune disease. But then I like to know how you imagine how a 'healthy' body reacts to ways and ways too much sugar.

Seriously they just see your bowel is red and say 'you got crohn's'. How the hell do they know? If I don't wash my penis and wear the same underwear everyday, it will be red and full of spots as well, this doesn't mean i have chlamydia or smt. Every part of your body will inflame if you just don't care about it. Why should the bowel be different?


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## Gra (Aug 2, 2012)

chrisnsteph1022 said:


> My common sense tells me to trust the National Institute of Health over some journal I've never heard of. And no, I didn't search autoimmune. I searched Crohn's and went to a reputable site for a description.


footnote: As far as I am  aware, the Lancet is one of the world's most respected medical journals.


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## ellie (Aug 2, 2012)

@Gra - yes, the Lancet is a highly reputable journal. I do think this is a particularly useful thread with respect to Crohn's categorisation ( if we all keep working away at it we may come up with some medically useful information!)
A couple of observations, based on personal experience:
- around 2000-2005 I experienced a lot of URTI's, with many repeated courses of antibiotics for persistent sinus infections ( I work in operating theatres, wearing masks for extended periods. So any cold/viral bug is "re-breathed" under a surgical mask)
-CD diagnosed 2005. Since then I have had almost NO respiratory tract infections (kids have grown up, but I now catch 10-20% of viruses presented to the household)
So, 2 comments:
i) were the repeated URTI's  a prodromal immune alteration?
ii)does my more recent resistance to viral "bugs" represent a dysregulation of the immune system?(rather than an "auto-immune" condition?) In the case of flu-like illnesses  I seem to be somewhat hyper immune at present.Conversely, a course of antibiotics will definitely stir up my CD..
Would welcome any thoughts 


 HD


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## ZM1019 (Aug 2, 2012)

kiny said:


> If people are really interested in this, here is a recent study linking MAP to T1D:
> 
> (to put this into perspective, people with crohn are more likely to get diabetes)
> 
> ...


Interesting on two counts:  Pharma companies should want control if it's an antibiotic fix even in a significant population of patients.  Of course it's the old thing of whether it's more financially beneficial to come up with the cure or leave it a chronic condition so the cash flow is continuous.  You can't be a business if you don't have a continual consumer need.  Investors don't like that.

Second interesting point is that I lived off the Northern coast of Sardinia for two years (of course that was 30 years ago).  Just a very odd connection to that study.


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## 723crossroads (Aug 2, 2012)

Kiny,
  Just wondering why you are being so hostile? Alot of people on this forum cannot take stress without it affecting them in a bad way. Your anger is causing me stress. I am very sensitive. So please be kind to everyone. Thankyou
Teresa


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## 723crossroads (Aug 2, 2012)

xardas said:


> Well, maybe this should be a different topic, but I like to give my opinion like this.
> 
> I've always been a sugar junkie, especially after I left my parents. I liked to eat lot of candy and drink lot of coke. The amounts are really absurd, like 3 or 4 bags of haribo per week, 4 bottles of coke and i can continue on like this. I never got really fat or problems from it and I just felt great and more energy when taking this. I read on some website not only me, but more patients habitly ate more refined sugar prior to their disease. I read from my diet book that carbs give you more energy, but you want more and more, plus your body can't digest it. So a lot will stay in your gut, your immune system tries to fight this, but later on it gives up hopes. Same as you put a small airconditioning in a large hot room. It seems to not work and might even be broken, because it has to run on the edge of its capabilities.
> 
> ...


Hi xardas,

  I am fairly new, and just read your article. I have crohn's and never really used much sugar and was into whole grains for years now. If I were to choose, it would've been salty snacks over sugary. But, it maybe different for every person who has crohn's. Just like I can eat alot of things others can't and have no problems. Sugar is bad for you. A month ago I cut out all sugar including sugar and sugary substances (high fructose corn syrup)in products, preservatives as much as possible. No bottled dressings etc... No white flour at all. I have lost ten lbs as of today just by doing this. So, even though you may think you don't eat sugar, it is in everything that isn't fresh fruits and veggies etc...


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## ctrl z (Aug 2, 2012)

Kiny isn't being hostile now. This is an old thread that someone bumped. Kiny is passionate about his beliefs. I, for one, really appreciate the topics he brings up and he has made several good points. He encourages critical thinking. It's something all patients should do instead of being blindly obedient to their doctors.


As far as autoimmune, autoinflammatory, whatever... I never understood why I have this disease. My body crunches out respiratory and sinus infections quicker and more efficiently than when my boyfriend is sick and the severity of any cold I may catch is also way less than my peers. I also rarely get sick. I don't know what kind of bearing that has on anything but if I'm supposed to have a crappy immune system, then why am I so efficient at getting better at other illnesses? I've never had this explained to me.

As far as it being Crohn's or Crohn.... stop nitpicking. At least it is spelled correctly :smile:


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## ZM1019 (Aug 2, 2012)

So here's something my brother brought up about MAP that I think is interesting and needs to be studied:

If MAP is so prevalent - and it is - then why are only certain people getting Crohn's and the like?  To me that indicates MAP is not the cause and that the cause lies somewhere behind it.  MAP research could help to uncover that  X factor - at least for come cases if it goes beyond just looking for the presence of MAP to why it triggers Crohn's in some but not others.

Consider this answer from Kiny to my question on why I grew around cattle and drank milk everyday as a child ( a LOT of milk, some unpasteurized) but had no symptoms then suddenly developed this around 50 years of age.

"As far as your questions of drinking milk / beef. It might be highly dependent on your intake and ability to clear the bacteria. If you drink a glass of milk for years with 100 MAP (just throwing out a number), this might cause no issues at all. But if you one day eat a piece of steak from a cow diagnosed with Johne's Disease that was slaughtered because it was dying (and make no mistake, this is how farmers operate) it might be far more detrimental to you than all those glasses of milk you consumed."

I think ability to clear the bacteria is somehow compromised and there may be the key.  I'm not going to jump to any conclusion as to why the ability to clear it is somehow compromised because there is a long laundry list of possible reasons for that.

I would say first step would be to test human's with Crohn's for MAP presence and establish the link in a significant population within that group.

Next step would be to test another group exposed to the same factors at the same time (family, communities, etc) and find out if they have it and how much they have.  This will tell them if it is unique.

Third step would be to look for the difference between the systems and responses of the two groups.  What is their physical condition, mitigating factors, genetics, etc.  What is involved that can cause the difference?

Report the possible causes of the inadequate response to MAP and widen the test pool to test those theories again.

I think they have started this but it's slow going or so it appears.

As for motivation behind that, I'll say it again - chronic diseases offer a continuous supply of repeat consumers.  Cures do not.  Investors want repeat customers and businesses cannot continue without investor or financial analyst support.  Only philanthropists throw money at studies like this because it's the right thing to do.


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## Tenacity (Aug 2, 2012)

I agree with ctrl z.  Kiny has obviously done a lot of research, and spent a lot of time on the subject, and just gets a little frustrated when someone comes along, without even reading the literature, and posts a theory blowing all these documented studies out the water.

As far as the spelling of Crohn's disease - everyone needs to remember that English is not all member's first language.  Also, words are spelt (or spelled depending on where you live), differently in other places of the world.  I personally feel it is impolite to correct a foreign person who is attempting to communicate in my home language.

This MAP debate has been going around for decades.  It is about time that we all join together, and put our foot down.  It definately needs some attention from us, even if oneday its proven be in incorrect.  The fact of the matter is that animals are dying from Johne's disease which is identical to Crohn's disease in humans.  They are taking animals that are dripping with millions of MAP bacteria who extremely ill, and grinding down their flesh and bones and feeding it to us as ground beef.  This is unacceptable and has to stop.  Nothing is going to change unless we all band together as one (and forget about how we spell things or if this is the cause), and do something about it.  We could start by asking our doctors to test all of us for MAP.  And this time, do not believe the results of a simple blood test.  It is not that easy to detect.  In fact, it is extemely hard to detect.  A recent study showed that 100% of crohns patients had MAP spheroplasts at the 18 mo mark.

Maybe Kiny can tell us what type of test to ask for, and we can all share the results?  I think it would be very interesting.


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## Tenacity (Aug 2, 2012)

"If MAP is so prevalent - and it is - then why are only certain people getting Crohn's and the like?   the presence of MAP to why it triggers Crohn's in some but not others."  End quote.

From all the research I have read, in simple terms, it appears to me the reason why some people get Crohn's from MAP infections and others do not, is because of the mutation of our NOD2 gene.  In people who do not have this mutation in their genes, they are able to identify and take care of the MAP infection.  

So we have a mutation of our NOD2 gene which makes us unable to properly identify and control the infection.


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## Tenacity (Aug 2, 2012)

Interesting so I thought I would share -

http://www.notmilk.com/lawbreakers.html


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## Mountaingem (Aug 2, 2012)

kiny said:


> Let me ask you, what does autoimmune mean to you in relationship to crohn.


Well, to me it means that due to a perfect storm of circumstances (both genetic and environmental) my body allowed the breakdown of my immune system. 

This disease process (Crohn's) in turn changed the normal function for my immune system,  causing it to misidentify my own tissue as a potential threat and create antibodies against it, in addition to mass producing white cells and inflammation.

The constant assault of inflammation, white cells, and antibodies combined over time led to scarring and damaged function of my small intestine, large intestine, joints, and liver.


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## pb (Aug 2, 2012)

Well said Mountaingem!


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## Mark in Seattle (Aug 2, 2012)

kiny said:


> That doesn't mean 6MP or TNF blockers are a good way to stop a pathogen though, it's just that they see it's stopping MAP (maybe on an insignificant level though), they see this in almost all successful crohn medications. But coming off the medication and the long term use of medication might actually end up helping MAP
> 
> Immune modulators like 6MP and TNF blockers could be making the disease both better and worse, the paradox that an immunesuppressant might actually stop a pathogen in the short term but help in the long term


kiny - I've read or watched on youtube about how immune modulating/tnf drugs can induce apoptosis and I guess kill some of the map in the process.  However, I've not read or watched on youtube any comment that long-term use of these drugs can benefit the map bug over time.  This in contrast to what I've read about the use of antibiotics, which may enable map to become resistant to the drugs.  Have you read/watched anything that actually suggests what you said, namely that immune-modulating drugs show some tendency to strenghten the map's virulence over time?

Also, do you have a feel for what the current status is for the development of a map-testing kit, as well as the status for the development and testing of a map-vaccine?  I noted that John Hermon-Taylor seems to be working on both of these items in London, England.  I've seen him on some web sites where he periodically posts a tiny little blurb, nothing really substantial, but he says he's working on these things, getting very close, and asking for financial donations from anyone who will give.  Is he for real?  Do you know whether his efforts are indeed close or sound?


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## Tenacity (Aug 2, 2012)

Mark - to answer your question about the current status for the development of a map testing kit, and the development of a vaccine.

A company called Redhill Biopharma bought a patented test for MAP from the University of Florida research foundation and is currently conducting clinical trials to test a drug called RHB-104.  It is "a proprietary antibiotics drug combination for Mycobacterium avium paratuberculosis (MAP) infection in Crohn’s disease."

"RHB-104 will be indicated for treatment of MAP infection in Crohn’s patients, suspected as the underlying cause for Crohn’s disease symptoms"

"RedHill further acquired an exclusive license from the University of Central Florida Research Foundation, Inc. to a patent-protected diagnostic test for the detection of the MAP bacterium."

If my memory serves me right, one of the locations for the trial is being done at Baylor School of Medicine in Houston, Texas, by a Dr. Graham.  This is a world renowned medical facility.  I believe it is in Phase II in Houston, and in Phase III in Europe.

To read the full article, here is one link:

http://www.redhillbio.com/product-pipeline/rhb-104/

Perhaps someone else can update us on the progress of a vaccine from John Hermon-Taylor.


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## ZM1019 (Aug 2, 2012)

Not helpful that they don't say which antibiotics are in RHB-104.

Also, interesting that the article says: "RHB-104 holds promise for providing long term remission with reduced side-effects allowing affected patients to lead normal lives. RHB-104 demonstrated promising results in phase II and phase IIIa trials in Australia and has an IND status in the US."

It doesn't state that it indicates it is a cure.  I wonder what the threshold is to state that results are promising.

Anyway, unless there are viable alternatives to Cipro and Clarythromicin (or any mycin), it's irrelevant for me.  The cure would definitely kill me.  I can live with what I have. 

Still hoping it's not an infection since my past with antibiotics has been pretty harrowing.   I'd be happy for everyone else, but sad for me.


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## EthanPSU (Aug 2, 2012)

My autoimmune disease hurts...


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## Mountaingem (Aug 2, 2012)

EthanPSU said:


> My autoimmune disease hurts...


Exactly Ethan!


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## kiny (Aug 2, 2012)

Mark in Seattle said:


> kiny said:
> 
> 
> > That doesn't mean 6MP or TNF blockers are a good way to stop a pathogen though, it's just that they see it's stopping MAP (maybe on an insignificant level though), they see this in almost all successful crohn medications. But coming off the medication and the long term use of medication might actually end up helping MAP
> ...


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## kiny (Aug 2, 2012)

Also note that in some healthy controls they also see low levels of MAP from time to time, and those people do not end up getting crohn's disease, so they are able to deal with the pathogen and clear it since it doesn't cause a long term effect on their health.

When a calf (sp? young cow) gets infected with Johne's disease, it can take a year or more before they actually see clinical symptoms. So for a while, the animal's body is able to deal with MAP without much issues. (like I said above, MAP reproduces really slowly, much slower than TB)

It doesn't go "get MAP infection" -> "Johne's Disease". No, it takes a long time.

When they check pediatric patients with crohn's disease, they wanted to see how widespread MAP was. If an infection is in kids it would manifest itself rather quickly and children are usually followed up by doctors more rigorously than adults. And in small kids they find MAP in CD patients (I linked the study in the multimedia section).

Kids with CD also have much harsher manifestations, their disease is in average much more severe than adults who get the disease.

(also, they see an immune response directed at MAP in people, including in people with crohn's disease, so our immune system knows it's there, and is trying to clear it, which makes the theory that MAP is the reason for the inflammation much stronger, MAP is seen as an invader, it's also why I asked why people are mixing up attacking harmless bacteria and infection, it's not the same thing for me, MAP is not a harmless bacteria that just enters our body without repercussions, no we mount at attack against it, so do "healthy" people without CD)


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## Mark in Seattle (Aug 2, 2012)

Here is an excerpt from this link, which indicates the 3 antibiotics in RHB-104

http://www.digestionblog.com/redhill-biopharmas-rhb-104-map-treatment-crohns-disease/

RHB-104 is a triple antibiotic formula that is used to treat MAP bacterium. MAP is a shorter way of saying “Mycobacterium avium subspecies paratuberculosis” bacterium. The inception of RHB-104 dates back to the late 1990s with development being started by Dr. Thomas Borody of the Centre for Digestive Diseases.  The three components of RHB-104 are Rifabutin, Clarithromycin and Clofazimine which are all rather common antibiotics, the difference is in using all three, dosage level & duration of treatment.


Here are Dr. Naser's pubmed publications (Dr. Naser is working on the RHB-104 project)

http://www.ncbi.nlm.nih.gov/pubmed?term="Naser SA"[Author]

Here is one of his publications which mentions a map test method using nanoparticles which will reduce dx time from 12 weeks to 1 hour.

http://www.ncbi.nlm.nih.gov/pubmed/22496916

And another which talks about some kids in the same neighborhood who contracted IBD at the same time, and he calls this an "outbreak".

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3287103/?tool=pubmed


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## Tenacity (Aug 2, 2012)

Some information about the trial and the lead investigator for RHB-104 in Houston, Texas:


RedHill Biopharma Appoints Key Opinion Leader Professor David Y. Graham from Baylor College of Medicine, Houston, Texas, as Lead Investigator for the US Pivotal Clinical Trial with RedHill's Crohn’s Drug – RHB-104


The Company is Preparing Two Parallel Placebo-Controlled, Double-Blind Clinical Trials with RHB-104 for the Treatment of Crohn's Disease in Patients who are MAP-Infected (a Phase II/III Trial in the US, to be lead by Prof. Graham, and a European Phase III Trial) and has Recently Announced the Acquisition of Exclusive Rights to a MAP Bacterium Companion Diagnostic Test for RHB-104


TEL AVIV, Israel--(BUSINESS WIRE)--RedHill Biopharma Ltd. (TASE:RDHL), an emerging Israeli biopharmaceutical company focusing primarily on development and acquisition of late clinical-stage patented new formulations and combinations of existing drugs, announced the appointment of Professor David Y. Graham, MD, as the lead investigator of the Company's planned pivotal US clinical trial with RHB-104, its proprietary therapy for Crohn's disease. In this role, Prof. Graham will have broad responsibilities in the design of the clinical trial and will be actively involved in its execution and in the publication of its results. 

Prof. Graham is an internationally renowned researcher and physician and is recognized as one of the most prominent gastroenterologists in the USA. He is currently a professor at the Baylor College of Medicine Departments of Medicine and Molecular Virology and Microbiology, Houston, Texas. 

Prof. Graham is internationally recognized for his expertise in Medicine and Gastroenterology and is the author of more than 800 scientific papers, several books, and 100 chapters in medical text books. He is a Master of the American College of Gastroenterology and a Fellow of the American College of Physicians, the American Academy of Microbiology, the American Association for the Advancement of Science, the Infectious Diseases Society of America, and World Innovation Foundation. He is a former president of the American College of Gastroenterology and the winner of many prestigious awards. He was a physician to NASA astronauts during the Apollo program. He is listed among the Top 50 Most Influential Gastroenterology Professionals of the 20th Century by Gastroenterology.com, one of ISI's Highly Cited Researcher in Clinical Medicine1, and one of the Best Doctors in America. Prof. Graham's research activities include widely diverse topics with particular focus on acid-peptic diseases and Helicobacter pylori, viral gastroenteritis, and the possible infectious etiology of inflammatory bowel disease (Crohn's Disease and Ulcerative Colitis).

Ira Kalfus, MD, RedHill’s VP Medical Affairs said today: "We are very excited about having attracted someone of Prof. Graham's stature and qualifications. Professor Graham is one of the world's leaders in gastroenterology and a key opinion leader in the US. His remarkable scientific expertise and clinical experience in the treatment of Crohn's disease, as well as his outstanding reputation will be invaluable for the successful execution of the planned clinical trial with RHB-104." 

Prof. David Graham, MD, RHB-104 Lead Investigator said today: "I am delighted to have been appointed as lead investigator for RedHill Biopharma's upcoming RHB-104 US pivotal trial. I am impressed with the Company's drug development team and enthusiastic about testing RHB-104 in the contemplated trial. For more than 25 years we have worked toward finding the cause of Crohn’s disease. Finally, we will be able to directly test a drug which may prove the hypothesis that one of the causes for the disease is MAP infection. The opportunity to support the development of this revolutionary drug is extremely compelling and I am hopeful that RHB-104 will benefit Crohn's patients around the globe."


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## kiny (Aug 2, 2012)

Thanks.

I wanted to say something about those TNF-a blockers too.

When people go on them (and I had infliximab in the past a few times) many feel better within 24 hours.

So because of it's anti-inflammatory effect they started using this in rheumatoid arthritis, and those people felt better within 24 hours too.

But some people started questioning if it was actually because their disease was under control or because of something else. So what they did was they put someone with rheumatoid arthritis on a TNF-blocker, that person said within 24 hours they felt better, and they decided they want to see why....so they did an MRI. The rheumatoid arthritis was not improved at all....so they didn't know why the patient said they felt better.

So they did another MRI, this time from the brain, and they saw a decrease in activity in response to inflammation, so while the clinical effect didn't happen but long after they gave someone a TNF-blocker, the immediate effect was that the pain goes away because the brain shows less response because of the decrease in TNF and that is what makes people "feel" better while in actually the clinical symptoms were exactly the same.

I can't find a study that shows this of crohn, but I can only assume it might be a similar effect.


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## Tenacity (Aug 2, 2012)

ZM1019 said:


> Not helpful that they don't say which antibiotics are in RHB-104.
> 
> Also, interesting that the article says: "RHB-104 holds promise for providing long term remission with reduced side-effects allowing affected patients to lead normal lives. RHB-104 demonstrated promising results in phase II and phase IIIa trials in Australia and has an IND status in the US."
> 
> ...


ZM-109 - Are you allergic to antibiotics?  If so, do you know which ones are ok for you?  I could try to find out which antibiotics are used in RHB-104 for you.

Also, could you tell us more about what you witnessed in the farming industry?  Did you ever see things that looking back at it now, would make you think it was unsanitary for human consumption?  Were there stringent inspections and rules to abide by in the agricultural industry when producing foods for human consumption?


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## kiny (Aug 2, 2012)

(hope no one takes this as a sign to actually take this stuff because this is about animals with Johne's disease)

here is a list of antibiotics used against MAP in cows from Johnes.org (it's a really good site run by good people)

(note that Flagyl and rifaximin etc are not on there, they are not macrophage penetrating afaik)








(they don't actually do this in practice though, animals get vaccinated first and if they get sick they get killed, antibiotics are much too expensive for them for cows, but many tests see how effective antibiotics are on cows)


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## ZM1019 (Aug 2, 2012)

Tenacity said:


> ZM-109 - Are you allergic to antibiotics?  If so, do you know which ones are ok for you?  I could try to find out which antibiotics are used in RHB-104 for you.
> 
> Also, could you tell us more about what you witnessed in the farming industry?  Did you ever see things that looking back at it now, would make you think it was unsanitary for human consumption?  Were there stringent inspections and rules to abide by in the agricultural industry when producing foods for human consumption?


I'm allergic to Penicillin, E-mycin and Cipro.  They won't give me any form of cillin or mycin because of the severity of my reaction to them.  So Clarithromycin would be off the table for me.  The other two I'm not sure about.  Sometimes the names don't clearly define what they are - for example Zythromax is a form of mycin and I can't take it.

Right now I can take sulfas, cyclines (Doxycycline, Tetracycline) and Keflex (Cefalexin).  But, I consistently and quickly build a tolerance to whatever I take until I finally become allergic to it.  It's happened with any medication I've taken over time, including a large number of pain killers.  I've even reacted to different vitamins and supplements over time.

I'm waiting to see what Pentasa does to me.

But for now, it looks like RHB-104 is off the table for me.


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## kiny (Aug 2, 2012)

Here is an interview with Borody about MAP and crohn, it's really detailed and he answers a ton of questions. Even if you question some things or don't agree, it is an excellent interview. (watch all parts, there are multiple)

(he mentions E Coli in a few studies too, he is not convinced that MAP is the reason for crohn in all cases, but invasive adherent E Coli strains are intracellular bacteria too, so you could assume that antibiotics again MAP might be effective against invasive E Coli too and in studies they are, Flagyl and rifaximin are again not effective, they are detrimental because they create antibiotics resistance)

Borody did the tripple antibiotics therapy, and got a reasonable amount of people into remission (they are still on antibiotics though).

Some critiques about his study are fair to make though.

-he didn't test for MAP before and after study to see the effect afaik
-some of those antibtiocs are also mildly anti-inflammatory, so you can argue that it was the anti-inflammatory effect, but I really doubt this, the anti-inflammatory effect is mild from what I read, and the patients he got had really high CDAI scores

http://www.youtube.com/watch?v=crm4pKz6X2M


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## Tenacity (Aug 2, 2012)

An excerpt from Paratuberculosis And Crohn's Disease: Got Milk?
by Michael Greger, MD 


Drinking milk from cows infected with Johne's disease is how people are exposed to paratuberculosis. Based on DNA fingerprinting techniques, there are two strains of MAP: one that affects cattle, and one that affects goats and sheep. All human isolates so far have been of bovine origin,[180] implicating milk.[181] Milk is the "logical" focus of exposure[182] because cows with Johne's disease secrete paraTB abundantly in their milk.[183] Even sub-clinical cows--those that are infected but appear perfectly normal--shed paraTB bacteria into their milk.[184] Although these bacteria are found free-floating in milk, their transmission may be facilitated by their presence inside pus cells.[185] This is a particular problem in the United States, as we have the highest permitted upper limit of milk pus cell concentration in the world--almost twice the international standard of allowable pus cells.[186] By US federal law, Grade A milk is allowed to have over a drop of pus per glass of milk.[187] These pus cells may facilitate the transmission of paraTB.[188]


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## Tenacity (Aug 2, 2012)

ZM1019 said:


> I'm allergic to Penicillin, E-mycin and Cipro.  They won't give me any form of cillin or mycin because of the severity of my reaction to them.  So Clarithromycin would be off the table for me.  The other two I'm not sure about.  Sometimes the names don't clearly define what they are - for example Zythromax is a form of mycin and I can't take it.
> 
> Right now I can take sulfas, cyclines (Doxycycline, Tetracycline) and Keflex (Cefalexin).  But, I consistently and quickly build a tolerance to whatever I take until I finally become allergic to it.  It's happened with any medication I've taken over time, including a large number of pain killers.  I've even reacted to different vitamins and supplements over time.
> 
> ...


That must be so tough - being so sensitive to meds with a condition like Crohn's.  I would wait and see what pans out with the RHB-104 trial, and if their theory is correct, I would research other ways to kill the MAP infection - if you are tested and proven to have it.


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## Moe. (Aug 2, 2012)

As a patient of borodys....
He believes it's a combination of pathogens. 
Hermon Taylor has created a DNA vaccine. That can eradicate MAP. 
So by the end of the year, or early next year an article will be printed 
On the results of the clinical trial. 
He has created a new MAP TEST. Which he has tested and it is 100% positive
On all crohn patients do far. 
 Maybe if you took a step in the right
Direction and listened and researched you would understand that kinky knows
20x the amount you know. 
And just to add, the australian doctors were laughed at during the
H.polyri saga . An ulcer caused by stress was the "belief"
Until they proved it wrong. 
Stem cell therapy,reboots ur immune system. So yes it can cure, but it will not 
Eradicate MAP/Ecoli


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## ZM1019 (Aug 2, 2012)

Tenacity said:


> Also, could you tell us more about what you witnessed in the farming industry?  Did you ever see things that looking back at it now, would make you think it was unsanitary for human consumption?  Were there stringent inspections and rules to abide by in the agricultural industry when producing foods for human consumption?


I completely missed this when I was too busy being depressed over antibiotics.

Well, first off you have to remember that I grew up around it and I'm 52 so that is all long ago (I left when I was 18).  In general it's all nasty and much worse now than when I was growing up.  Back then animals were kept with more space in pasture and brought up as food or for milk.  Now they keep them in very cramped quarters and I can tell you that no matter how much you clean out stalls, there are feces in there, not to mention urine.  Even if you left out the fact that the feed is pumped full of antibiotics and sometimes ground up cow/pig/etc parts), it's grown in ground that has years and years of pesticides dumped on it that has been accumulating in the aquifers which is then pumped out and sprayed back onto the fields.  They were using DDT on those fields until I was maybe about six or eight (old enough to remember when there was scandal over the amounts of it in meat), so my guess is that it's still there along with everything else.  

Now add in how that feed is kept.  It sits in silos and barns where rats and insects crawl through it all the time, leaving behind feces and bacteria and God knows what else.  Then you get all of their natural predators crawling through it after them and leaving their deposits behind.  Then there are birds in there dropping feces wherever they are.  And remember, even with standards, they allow so many parts of bug guts and feces into your food because it's not financially feasible to keep it all out (meaning the farmers would go broke and we basically don't know how to feed ourselves any longer or have the space to do so).

Now on to veggies and fruit, grown in the same ground with insecticide on it and bugs and animals crawling through it.  It's picked when it isn't ripe and gassed to make it look ripe so everyone in the store will think it's pretty.  But all of that is not what we would normally consider ripe or what we would have eaten before 20 years ago so there is no telling what it's doing to our bodies because we weren't evolved to digest that.  Once that stuff is picked it's thrown in to trucks that are not particularly clean and stored in places that try to be clean but are usually porous.  And sometimes you get farmers raising food as well as livestock and transporting both in the same vehicles or walking around in said vehicle with boots on that just walked through animal feces.

They habitually slaughter animals that are sick, malnutritioned, etc (just like what is happening now with the drought) so they don't lose all of their money and they harvest veggies and fruit that aren't ready if the weather goes wrong or insects invade or the plants/trees catch some kind of disease.  It's a business.

Anyway, I buy organic because I can't tolerate starch, but to be honest, it's grown in the same ground so I don't think it's much better.  It's just that organic or farmer's market veggies and fruits aren't usually gassed and waxed so I have a better idea of how ripe they are.

I don't remember inspectors being talked about except with milking machinery and milk trucks.  They may have had others and I just didn't see them because I was in school.  That is very possible.

I try not to think about it all because it freaks me out and I don't want to eat.


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## Tenacity (Aug 3, 2012)

Hi Moe - welcome to the forum

I was just going through all the you tube videos posted by Kiny about Dr. Borody - and then I saw your post that you are a patient of his!  Would you mind sharing with us how the treatment worked for you? I'm sure everyone would really be interested to know.

Regarding the stem cell transplant, I do disagree on it not getting rid of the map. Between all the antibiotics needed, and new immune system reboot (without the NOD2 gene in the donor match) its more than feasible to end up with a cure, that does eliminate map. Granted the donor cells take, and the donor cells are free of NOD2 gene. Which is in their screening when selecting a match.


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## kiny (Aug 3, 2012)

ZM1019 said:


> They habitually slaughter animals that are sick, malnutritioned, etc (just like what is happening now with the drought) so they don't lose all of their money and they harvest veggies and fruit that aren't ready if the weather goes wrong or insects invade or the plants/trees catch some kind of disease.  It's a business.


My biggest worry is the slaughter of JD positive animals for human consumption. There is a study that checked how prevalent CD was with people who drank milk and ate meat. People who drank milk were not positively associated with increased CD, but people who ate meat were.

(I wanted to link the study about water but he corrected himself in a later study so I'll leave it be)


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## Tenacity (Aug 3, 2012)

I believe the downside to the farmer when his cows get JD is that they will typically get a couple hundred dollars less per animal. So what does that spell out to big corporations like Mc Donald's... JD meat is cheaper, and with the amount of meat they process per year, any tiny savings per animal could easily add up to millions over the annum. Not saying they do this, but as well as I know business, I wouldn't be completely shocked if these places order lots of JD and other sick meat on the regular. Think about it...they have to go through extreme margin cuts somewhere, in order to keep getting that burger out to you for only a buck! All can be covered up contractually. Sometimes you might be getting what you pay for?

Not to start any controversies or anything... Haha


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## kiny (Aug 3, 2012)

Many countries have recently started inspections for paratuberculosis, most countries still do not demand JD is checked, but they get bonuses for it if they are paratuberculosis free.

But in the countries that do check and enforce it, I know what happens since I read farmer's forums about paratuberculosis, and what they do is slaughtering for consumption or sell the cows before the next inspection.

(another things is that farmers themselves don't like JD, not because laws, but because it decreases their milk, it infects the whole herd after a few years, so they pretty much all end up dying)


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## kiny (Aug 3, 2012)

It's not just cows btw, pigs have Ptb too, but it's different than in cows. They find it in lymph nodes in their brain or something, that's why it's illegal to sell the pig head or something now in my country, idk much about pigs.

I don't think it's found in chickens much, not sure.


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## Moe. (Aug 3, 2012)

Hi tenacity. 
Fortunately I'm on the first line treatment. 
Presidione and anti-inflammatories. The doctor refuses
To give anti-map therapy unless it's severe. He believes that in
Time and were talking ten years that it will be treated as an infection. 
The taking of anti-biotics will create a resistance for future treatments. 
He has done hpi for crohns in the colon with 10 day infusions and it has worked
Very well for cases in the colon.  We are talking ulcers and heavy inflammation.
Amazing stuff. We all need to remeber in the next 5 years will
Have the following treatments
-hpi maybe
-ssi vaccine
-donor stem cells
-muconda
-DNA map vaccine
- immuno vaccine.

It sucks that it takes time, but a lot of supplements do help.
Hope it gelps


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## ellie (Aug 3, 2012)

Just watched 1-8/9 of Prof Borody's  interviews (couldn't seem to find 9/9?!?)
Just fascinating stuff - makes so much sense. Time to do a bit more research!


 HD


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## Mark in Seattle (Aug 3, 2012)

kiny said:


> It's not just cows btw, pigs have Ptb too, but it's different than in cows. They find it in lymph nodes in their brain or something, that's why it's illegal to sell the pig head or something now in my country, idk much about pigs.
> 
> I don't think it's found in chickens much, not sure.




kiny, what is your country?


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## kiny (Aug 3, 2012)

belgium


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## kiny (Aug 3, 2012)

here a study from portugal on pigs

(they found it in my country multiple times in their head iirc, in the lymph nodes, so they banned selling of their heads, but they can still sell the animal, which is ridiculous, it's a dying animal going on the market, no questions asked)


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## Mark in Seattle (Aug 3, 2012)

Moe, what sort of supplements help?

Also, you say you are on prednisone and "anti-inflammatories".  What sort of anti-inflammatories besides prednisone?

What does Dr. Borody say about the use of biologics or immunomodulators?  Will he try you on those at some point or is he against them?

What is "hpi"?  And does "hpi" only work for UC or for CD as well?  Is that like the faecal transplant?  Does he talk about that for CD at all?


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## Moe. (Aug 3, 2012)

http://www.crohnsforum.com/showthread.php?p=481526#post481526


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## Moe. (Aug 3, 2012)

They use biologics. Not huge fans. Immunomodulators never spoken about. Hpi is fecal transplant. Read the link attached. You will see this new study. Long thread but it's interesting. 

For supplements. Honestly I think everyone is different but. Cats claw I have to say is really helpful. 
Here is a link to a very good blog that I think will help. I think you
Might now it but in most articles he states what works as a supplement and how
http://crohnsandibsbreakthrough.com/blog/ goodluck


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## 723crossroads (Aug 3, 2012)

Thankyou Moe for posting that. I read the whole thing and it is fascinating and changing my way of thinking.  Teresa


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## carey (Aug 3, 2012)

Why is there such a big freaking deal about autoimmune or auto inflammatory, who cares, it's an illness we will have to deal with for the rest of our lives, why don't you rather talk about the best treatments for this condition, that would be more helpful to this community


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## EthanPSU (Aug 4, 2012)

carey said:


> Why is there such a big freaking deal about autoimmune or auto inflammatory, who cares, it's an illness we will have to deal with for the rest of our lives, why don't you rather talk about the best treatments for this condition, that would be more helpful to this community


:dog:


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## Moe. (Aug 4, 2012)

Because, we need to understand the root cause.
People need to educate themselves. If you wanna sit there
And not listen that's fine. Don't get involved.
That's your personal choice. But if people want to learn
Communicate, understand than they have the right to communicate 
And ask whatever they feel like.
The reason research lacks is because it's labelled autoimmune. 
Stem cell therapy is good, but seriousily we all know it's excessivand expensive.


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## ellie (Aug 4, 2012)

There's so much of Prof Borody's theory that resonates with me. The more I think about it, an atypical infective agent really fits. (we currently know about bacteria, viruses, fungi, and most recently, now, prions - are there as yet unrecognised variants?) The Chron's patient's relative resistance to most circulating "flu-like" bugs could well be a reflection of a geared up immune system continually poised to fight the MAP intruder, not an immunologically "deficient" one.. Just a thought.. 
 I have some recollection of reading that people who are HIV +ve experience less CD symptoms than the general CD population. Anyone else noted this?


 HD


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## Moe. (Aug 4, 2012)

Law of physics. Life. Chemistry. Medicine and every thing on this planet.
Every action causes a reaction.


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## sfmreb2 (Aug 20, 2012)

Thought I would add my 2 cents worth. About 12 years ago on a different CD site there was a big deal about some Dr's who decided that CD was not an autoimmune disease. It was their idea to increase the immune system to treat Crohns. So this is nothing new, just someone with "new" idea. Remicade really worked great for me when I started it 10 years ago. Does that mean my immune system was raised by Remicade or lowered. What ever works - Go for it.


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## braveheart (Aug 22, 2012)

To me it is quite clear Crohn is an autoimmune disease.
I’ve been treated with immunosuppressants for years.


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## yosemitegirl (Apr 8, 2014)

Thanks, David, for moderating this thread emphasizing a kinder tone. Different info can still be presented with courtesy. I was on another thread where the moderator didn't step in appropriately. Having had Crohn's X 45 years (before most could even spell it), the info has always leaned towards it being auto immune, but an immune deficiency is interesting. Time will tell. Thanks to all who have posted.

Michele Lea


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## yosemitegirl (Apr 8, 2014)

I've done quite a lot of research over the decades (before Google, also). There are a large number of immunodeficiency syndromes that present clinical and lab characteristics of autoimmunity. The decreased ability of the immune system to clear infections in these patients may be responsible for causing autoimmunity through perpetual immune system activation. (An example of common variable immunodeficiency, CVID, where an auto immune disease is seen is IBD.)

I cross-referenced auto immunity, immune deficiency and auto inflammatory. Auto inflammatory is a relatively new category, and though the investigations are being debated, it is definitely entirely genetic. Something in the primitive immune system is causing unprovoked inflammation. No pathogens or external trigger. So Crohn's is not autoiflammatory by current clinical definition. 

Dr. Crohn discovered what would become regional enteritis when what he thought he was seeing was tuberculosis of the terminal ileum. To this day I wonder about the possible connection to para tuberculosis.

Most of this info can be found on the primary immunodeficiencies website. Great explanations of the many facets to the immune system. It is no wonder treating Crohn's is such a complex balancing act. There are even some current thoughts that UC and CD are not that similar, though both are  considered an IBD.

There is so much more to learn. Stay tuned...

Great thread, great info.

Michele Lea


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## D Bergy (Apr 8, 2014)

From what I have experienced, I think the confusion regarding the disease is how "autoimmune" is defined by the person.  

Autoimmunity, it seems is generally thought of as a permanent condition that is hopelessly tied to genetics or some other irreversible problem.  Possibly, this could be the case in some.  I think autoimmunity is nothing more than a physical state that can be triggered for any number of reasons.  In another words, the magic bullet is not going to be found because there are multiple causes.  On the other hand, if you can identify, and eliminate the cause, you have a shot of reversing the disease.  But, even that is not as straight forward as it would seem. 

When an autoimmune state is reached, and allowed to go on for years, the pathogens that cause symptoms of whatever disease autoimmunity results in are well established and now are very difficult for even a restored immune system to eliminate. 

In my particular case, I have reason to believe one or more strains of mycoplasma may be the cause of my autoimmunity.  I am not 100% certain, but that seems to be the case at this time.  It seems to have a dual role as it also causes symptoms whenit reaches a certain threshold.  

This infection allows other pathogens to proliferate, and were well established.  The coinfections that are also responsible for other symptoms are a strain of E-Coli, MAP, H-Pylori.  There may be others also.  

My current thinking is that autoimmunity likely has multiple causes, but is not always or may never be irreversible.  I don't know for sure because of so many possible causes.  Lyme disease from the Borrelia Burgdorferi bacteria can cause autoimmunity.  You may or may not develope Crohns from this state, but the autoimmune state will result in further disease of some kind.  Remove the pathogen and then Crohns symptoms are often eliminated.  

I am not presenting this as fact, but the premise I am treating under.  I put it out there for others to prove or disprove.  I am taking theory from many sources and testing directly on myself using an old alternative treatment.  I use personal results or failures to develope the running hypothesis for my own disease.  

Take it or leave it.  Just what I think I have deduced from being ill and getting well.  If I am wrong, or my self treatment fails, I will suffer the consequence.  If I am correct, and my treatment works, I will do fine.  Time will answer the question one way or another. 

I hope everyone can get control of their disease, one way or another. 

Dan


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## The Real MC (Apr 11, 2014)

kiny said:


> That would be autoinflammatory.


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