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

[ellie]

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

 

[Mark in Seattle]

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?

 

[kiny]

belgium

 

[kiny]

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)

 

[Mark in Seattle]

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?

 

[Moe.]

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

 

[Moe.]

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

 

[723crossroads]

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

 

[carey]

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

 

[EthanPSU]

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:

 

[Moe.]

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.

 

[ellie]

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

 

[Moe.]

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

 

[sfmreb2]

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.

 

[braveheart]

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

 

[yosemitegirl]

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

 

[yosemitegirl]

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

 

[D Bergy]

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

 

[The Real MC]

That would be autoinflammatory.