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10-30-2011, 06:49 PM   #1
kiny
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The (mis)labelling of Crohn's as an autoimmune disease and no evidence of a self-antigen

http://www.thelancet.com/journals/la...282-6/fulltext

Last edited by kiny; 04-11-2014 at 07:29 PM. Reason: don't think this needs more bumping, there's enough evidence now that the study I linked was correct, bacteria are involved and there are innate immunodeficiencies
10-30-2011, 07:14 PM   #2
chrisnsteph1022
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It is an autoimmune disease.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/
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10-30-2011, 07:18 PM   #3
kiny
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That would be autoinflammatory.

Last edited by kiny; 08-01-2012 at 01:31 PM.
10-30-2011, 07:25 PM   #4
chrisnsteph1022
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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.
10-30-2011, 07:29 PM   #5
kiny
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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?

Last edited by kiny; 10-30-2011 at 08:02 PM.
10-30-2011, 07:43 PM   #6
chrisnsteph1022
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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.
10-30-2011, 07:45 PM   #7
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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.
10-30-2011, 07:51 PM   #8
D Bergy
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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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10-30-2011, 07:53 PM   #9
chrisnsteph1022
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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.
10-30-2011, 07:55 PM   #10
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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!
10-30-2011, 07:58 PM   #11
kiny
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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
10-30-2011, 08:02 PM   #12
kiny
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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.
10-30-2011, 08:09 PM   #13
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Thanks for posting. Do you have a link to the full article? Looks like a good one.

Best, Ekaj
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10-30-2011, 08:11 PM   #14
kiny
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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
10-30-2011, 08:39 PM   #15
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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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10-30-2011, 08:45 PM   #16
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Kiny,

What you're posting is very fascinating but PLEASE improve your tone. We're all on the same team!
10-30-2011, 09:33 PM   #17
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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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10-31-2011, 04:43 AM   #18
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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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10-31-2011, 06:35 AM   #19
D Bergy
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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
10-31-2011, 06:53 AM   #20
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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.
10-31-2011, 09:24 AM   #21
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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.
10-31-2011, 09:36 AM   #22
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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?
10-31-2011, 12:23 PM   #23
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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...
10-31-2011, 01:51 PM   #24
D Bergy
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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
10-31-2011, 06:19 PM   #25
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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.
10-31-2011, 06:38 PM   #26
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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.
10-31-2011, 07:15 PM   #27
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http://www.crohnsforum.com/showthrea...ght=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.
10-31-2011, 08:33 PM   #28
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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.
07-31-2012, 12:51 AM   #29
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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=N8AYh...feature=relmfu
08-01-2012, 09:17 AM   #30
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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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