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Crohn's Disease Forum » General IBD Discussion » The (mis)labelling of Crohn's as an autoimmune disease


 
08-02-2012, 10:16 PM   #91
Tenacity
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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]
08-02-2012, 10:22 PM   #92
Tenacity
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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.
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.
08-02-2012, 10:26 PM   #93
Moe.
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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
08-02-2012, 10:30 PM   #94
ZM1019
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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.

Last edited by ZM1019; 08-03-2012 at 08:22 AM.
08-02-2012, 11:19 PM   #95
Tenacity
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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.

Last edited by Tenacity; 08-03-2012 at 12:32 AM.
08-03-2012, 12:42 AM   #96
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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)
08-03-2012, 01:47 AM   #97
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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
08-03-2012, 01:53 AM   #98
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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)
08-03-2012, 01:57 AM   #99
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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.
08-03-2012, 03:46 AM   #100
Moe.
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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
08-03-2012, 08:16 AM   #101
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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
08-03-2012, 10:49 AM   #102
Mark in Seattle
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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?
08-03-2012, 10:50 AM   #103
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belgium
08-03-2012, 11:12 AM   #104
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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)

08-03-2012, 02:49 PM   #105
Mark in Seattle
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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?
08-03-2012, 06:19 PM   #106
Moe.
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http://www.crohnsforum.com/showthrea...526#post481526
08-03-2012, 06:22 PM   #107
Moe.
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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
08-03-2012, 09:37 PM   #108
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Thankyou Moe for posting that. I read the whole thing and it is fascinating and changing my way of thinking. Teresa
08-03-2012, 10:54 PM   #109
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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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CROHNS DISEASE
Diagnosed 2009.
MEDICATIONS:
Asacol, Prednisone, Imuran, Sulfa meds,
Bentyl, Remicade, Humira, Entocort,
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(All failed)
Have not experienced remission yet
CURRENTLY ON:
Suboxone

08-03-2012, 11:01 PM   #110
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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
08-04-2012, 04:21 AM   #111
Moe.
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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.
08-04-2012, 06:45 AM   #112
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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
08-04-2012, 06:58 AM   #113
Moe.
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Law of physics. Life. Chemistry. Medicine and every thing on this planet.
Every action causes a reaction.
08-20-2012, 03:13 AM   #114
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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.

Last edited by sfmreb2; 08-20-2012 at 04:49 PM.
08-22-2012, 10:01 PM   #115
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To me it is quite clear Crohn is an autoimmune disease.
Iíve been treated with immunosuppressants for years.
04-07-2014, 11:18 PM   #116
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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
04-08-2014, 12:40 AM   #117
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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
04-08-2014, 09:07 AM   #118
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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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04-11-2014, 11:23 AM   #119
The Real MC
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That would be autoinflammatory.
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