IBD not an autoimmune disease, new research suggests

[GoJohnnyGo]

LINK

Interesting tangent.

 

[tiloah]

I find this confusing. If your immune system is attacking your body, isn't that still autoimmune? Even if it's via a different mechanism than other autoimmune diseases?

 

[DustyKat]

Thanks for posting GJG. It certainly is interesting!

Dusty.

 

[gypsigirl28]

It is interesting and I have to say it is also a bit confusing at the same time.

Thanks for posting this info GJG

 

[Crohns08]

I found this to be highly interesting and much more plausible than current theories!

 

[lynx]

wow that was interesting. Hopefully some better therapies develop, more targeted and without the weird side effects. thanks for the post GJG!

 

[tflock]

I understand what they say but it altogher confusing. If anyone looks at Crohns and other autoimmune diseases, they all have the same symptoms, complications and treatments. Crohns is probably an autoimmune disease, it behaves too much like all the other ones. The TNF alpha blockers (Remicade, Humira, Cimzia) all used to treat Crohns along with RA, UC, psorias, and others. If researchers and doctors WANT to find the cure, they need to stop coming up with 20 different theories as to what is the cause of the disease.

 

[crazycanuck]

Im sorry if this comes off wrong tflock but maybe the reason they cant find the cure or even a cause is because they havent found the right theory to work off of. Imagine with say a car thinking god that ticking sound is definately coming from the transmission and trying to fix it when actually the problem is with say a tire, you could research and try 1000 different things with the transmission anf no fix. Same could be said with this, maybe if this is correct, and thats a fairly reputable university then maybe we will have better medicine, less side effects, and with a miracle maybe a cure.

 

[tflock]

It makes sense with what u are saying. I understand their reasoning with so many avenues of research, because they have to make sure. It is just frustrating because the longer no definitive answer or research approach is found, the longer the cure for this is not found. Some articles I have read say that Crohns could possibly be an irreversible change. I am just frustrated by the fact that instead of working to find the MOST probably cause of the disease, researchers explore so many hypotheses to what could cause this. I understand that they have to use more than one theory (and I am glad they do) but most GI doctor will probably tell you that it falls under as a autoimmune disease.

 

[Mejay07]

I may be completely off base here, but I am thinking aloud.

Do they know what causes the other auto-immune diseases, such as psorais, RA, or even Lupus?
If they are all the same type of disease, and have interchangeable symptoms could the route cause be similar to that in these other diseases? and maybe somewhere along the way it manifests differently or in a different part of the body which differentiates the different diseases?

Okay I rambled a little bit, I hope this makes sense.

 

[IBD]

Interesting, first time I've heard of anything like this.

 

[cdugas8]

I also read the article BUT, it doesn't say that IBD is not an autoimmune disease.

It says that based on research on another auto-inflammatory disease (cryopyrin-associated periodic syndromes (CAPS)) they now believe that CAPS disease is regulated by the innate NOT adaptive immune system. They used a special research method and suggested using it for IBD research. The special method is mice with genetic information inserted into a particular part of the genome. Poor mousy

I sure do hope for more research...

 

[rpmegml]

interesting article

 

[D Bergy]

I think they are barking up the wrong tree as far as Crohn's is concerned, and most if not all other autoimmune diseases.

Pathogens cause disease, and that is true most all of the time. There are many thousands of organisms that are not even yet identified that live in the body. The effects on the body that the ones they know about are not even all that well known.

They may be able to stop the bodies response to these pathogens, and that may lead to a useful treatment, but runs the risk of allowing the pathogen to spread further.

Just my opinion based on my own observations.

Dan

 

[flowergirl]

it also could mean that some people's autoimmune process is innate and some adaptive. could be why some people do well on biologics and others don't.

 

[Jessi]

Very interesting. Thanks for sharing this, Johnny.

 

[kiny]

I find this confusing. If your immune system is attacking your body, isn't that still autoimmune? Even if it's via a different mechanism than other autoimmune diseases?

Crohn's seems to be very very different from an autoimmune disease.

One reason is how Infliximab (remicade) works. Infliximab might be promoting the immune system, NOT decrease it like imuran.

I am getting infliximab and one of the tests here in Belgium I had to sign, if it was ok to get one more blood sample each time to test what Infliximab actually does. THey want to know what it actually does, and they think that Infliximab stimulates and normalises the immune system instead of decreasing it, which goes completely against the notion that crohn's is an autoimmune disease.

Same thing happens which Low Dose Naltrexone, which works for Crohn's disease, and this drug ALSO stimulates and normalises the immune system, again completely contradictory to an autoimmune disease.

Doctors were very surprised that Low Dose Naltrexone actually worked on Crohn's btw.

If Crohn's was simply an autoimmune disease, these 2 drugs should be making the disease worse, but they don't, both drugs are one of the most effective if not the most effective against Crohn's.

 

[kiny]

Also, I don't know how you are supposed to change that Wikipedia page about Crohn's disease, but it should not say that Crohn's is an autoimmune disease, because that is just one opinion, and likely not the right one, I just don't know how to properly change this. It's been wrongly marked like that for years.

Someone should change it, I pulled out that sentence at one time and it got changed back. It should be more correct.

 

[tiloah]

Well it's not exactly "one" opinion, it's the widely held opinion by the medical community at this time. I would love to read about the study you have been involved in. Have they published any of their results yet or do they have information about it somewhere? Who is doing the study?

 

[kiny]

Well it's not exactly "one" opinion, it's the widely held opinion by the medical community at this time. I would love to read about the study you have been involved in. Have they published any of their results yet or do they have information about it somewhere? Who is doing the study?

Gasthuisberg is where the study is being done and where I go. It's the University clinic of Belgium and works together with the KUL, that's the medical university (where I also study).

The study is private, so the form just gets given to us, but the results will surely be published as they always do.


As far as "it's the widely held opinion by the medical community at this time", well, that's not the case here, and I really wish people would stop spreading this info, it might be for the general population, but here doctors do not seem to put this disease just into one simple category, if they did, LDN would have never been tried on anyone.

If you de facto treat this disease as an autoimmune disease, you are not only depriving yourself of the right medication, you are also perpetuating the idea that we already know the cause of this disease, and we obviously do not at this point in time.

The more studies that are being done, the less sense it makes to say Crohn's is an autoimmune disease.

 

[handle]

Infliximab does not "stimulate and normalise the immune system". It is an anti TNF alpha drug which means it prevents the destructive inflammatory process caused by inflammatory cytokines (TNF alpha.) LDN is believed to be an immune regulator, not a stimulator.
It is an interesting article about the difference in innate and adaptive immune function, and the idea that it might be the innate immune system that has more to do with auto-immune diseases than the adaptive immune system.
(I'm glad people can't randomly change Wikipedia pages!)

 

[kiny]

Infliximab does not "stimulate and normalise the immune system".

Stop spreading fud from Wikipedia. spreading info and denouncing it as absolute truth is TERRIBLE

The truth is we don't know what infliximab actually does, at all, that's why there is research being done so we understand what it does.


There is evidence that infliximab normalises and stimulates the immune system, just like LDN.

There is also evidence to show that it might target MAP.

There is also evidence that imuran might target MAP.


Every single one of those things goes 100% against the idea that Crohn's is an autoimune disease.

 

[kiny]

.
(I'm glad people can't randomly change Wikipedia pages!)

Why, so they can write halftruths as truths?

The fact that Wikipedia says Crohn's is an autoimmune disease while there is a lot of evidence that shows it is not, is horrible.

It does a disservice to everyone, including you if you suffer from Crohn's disease.

Wikipedia is not going to cure us, researchers and people who question everything are.

Farmacy companies would love nothing more than to tell you that crohn's is an incurable autoimmune disease, their worst nightmare is when someone proves it's MAP or something else and proves it's simply a bacteria. It would end their industry overnight and we would all be able to get cured.

If people keep perpetuating the idea that Crohn's can only be an autoimmune disease, then it limits people's ability to think outside of the box and to admit that it could be a bacterial disease or something else.

 

[tiloah]

Nobody knows the cause of Crohn's and I don't think anyone is trying to say that they do. But it is known that the immune system is involved (at whatever point) and I think that's good enough for me to refer to it as an autoimmune disease. But it may be semantics.

I think it would be absolutely tragic if we allowed ourselves to be pigeonholed and only researched one element, but I don't think that has happened. There is a lot of evidence that supports the idea that it is an autoimmune disease. I think that's why your posts are so fascinating to me. This is the first I have heard about any of this so I will be eager to see the results. I am not sure exactly what they are trying to figure out? It is known that biologics work by binding to TNF-alpha, which thus prevents its action in inflammation. I think this is more a "treat the symptoms than the cause" approach, because it doesn't address why there is an excessive amount of TNF-alpha causing inflammation in the first place. But given that TNF-alpha is a protein of the immune system, I think it is safe to say the immune system is on board. I would also be fascinated to learn how a biologic "targets" MAP. My interest is certainly piqued.

 

[tiloah]

I guess what I'm trying to say is people don't refer to it as that arbitrarily. There is evidence to support it. But if it is wrong, there will eventually be enough evidence against it. I think it may take people a while to come around to a different concept (science can be so slow sometimes), myself included.

 

[kiny]

Nobody knows the cause of Crohn's and I don't think anyone is trying to say that they do. But it is known that the immune system is involved (at whatever point) and I think that's good enough for me to refer to it as an autoimmune disease. But it may be semantics.

I think it would be absolutely tragic if we allowed ourselves to be pigeonholed and only researched one element, but I don't think that has happened. There is a lot of evidence that supports the idea that it is an autoimmune disease. I think that's why your posts are so fascinating to me. This is the first I have heard about any of this so I will be eager to see the results. I am not sure exactly what they are trying to figure out? It is known that biologics work by binding to TNF-alpha, which thus prevents its action in inflammation. I think this is more a "treat the symptoms than the cause" approach, because it doesn't address why there is an excessive amount of TNF-alpha causing inflammation in the first place. But given that TNF-alpha is a protein of the immune system, I think it is safe to say the immune system is on board. I would also be fascinated to learn how a biologic "targets" MAP. My interest is certainly piqued.

http://www.ncbi.nlm.nih.gov/pubmed/19437144 is helpful

the idea that crohn's is not an autoimmune disease and might be an immune defficiency, goes hand in hand with the idea that it's a bacterial disease and that it is an MAP infection, it would also explain why some medicine work that shouldn't work on an autoimmune disease, that's why more and more people are trying to get to the bottom of this, it also doesn't mean that MAP is the sole reason, there could be people with crohn's who don't have MAP, and tests show there are. But because MAP is incredibly hard to detect, and because the majority of people do have it in abnormal numbers in their blood cultures, it supports the idea that Crohn's is not an autoimmune disease.

 

[kiny]

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

the link before can't be fully read without access so this helps too, there are many MAP / Crohn's publications and a lot of info that disprove this is an autoimmune disease

is it proof? I don't know, because there is no cure yet, but we know medicine that works against infections also works against crohn's, not 100% effective, but then tuberculose also took years before people found a reasonable anti-bacteria

 

[D Bergy]

Crohn's has an immune system dysfunction element to it, so autoimmune may or may not be the right term for it. I fully disagree with the notion that the body is attacking its own tissue because it has gone berserk, or that it is going after some harmless bacteria.

From my own experimentation with the MAP bacteria using an alternative treatment method, I have eliminated a spot of Psoriasis on my shin that has been there since my first Crohn's symptoms over five years ago. Two treatments and the Psoriasis swelled up and died right out, and that was five months ago. It has not come back.

I used many many different method to try get rid of it. Some of the most powerful treatments I have available that will stop about anything else. Nothing worked until I targeted the MAP bacteria with specific frequencies that were calculated to disrupt the DNA of this bacteria. This is not an accepted or approved method of treatment, but I have used it for several years and often enough it kills the pathogen you target.

I also gave myself a nasty pain in my guts at the same time. I stopped using the treatment for MAP, as I have another infection of Mycoplasma Pneumonia that I am getting rid of right now. This infection has me disabled, but I am recovering real fast now after taking Zithromax, and a natural antibiotic and frequency treatments for Mycoplasma.

Once I am fully recovered, I will go after the rest of the MAP bacteria if there is any left.

My conclusion from all of this is that I do have the MAP bacteria, it was the cause of my Psoriasis, but I am not certain it causes all Crohn's symptoms, or that it even causes my symptoms. I do know when I disrupt it, I get pain and swelling in the guts.

That is my experience so far with this bacteria.

Dan

 

[David]

This thread was reported, thus my response below.

The fact that Wikipedia says Crohn's is an autoimmune disease while there is a lot of evidence that shows it is not, is horrible.

From Wikipedia:

Crohn's disease is thought to be an autoimmune disease, in which the body's immune system attacks the gastrointestinal tract, causing inflammation; it is classified as a type of inflammatory bowel disease.

They're not saying IS, they're saying thought to be.

To everyone:

If you strongly disagree with something someone is saying, the best way to go about convincing them otherwise is to source your information from a reputable source and in a diplomatic, supportive manner, prove your assertion. That lets everyone evaluate the source, educate themselves, and change their thinking if warranted.

We're all on the same team here :soledance:

Thanks

 

[RFarmer]

Umm. Well this is fun! I could be wrong, but I thought Infliximab was specifically engineered from mouse proteins to block TNFa? Like, specifically engineered to suppress? I don't think it was just some medicine they found to mess with Crohn's, like penicillin or whatever.

But I don't know this for sure, so someone else can look it up if they want :/

 

[David]

Umm. Well this is fun! I could be wrong, but I thought Infliximab was specifically engineered from mouse proteins to block TNFa? Like, specifically engineered to suppress? I don't think it was just some medicine they found to mess with Crohn's, like penicillin or whatever.

That is correct, however, there are other TNFa blockers that are ineffective against Crohn's Disease. This study showcases the differences between one TNFa blocker that doesn't work and Remicade.

In the end, they're not completely sure why Remicade works, it's theoretical at this point.

 

[flowergirl]

the MAP thing almost makes sense to me. but i still think there is an immune response in there somewhere. i (and i've heard others) who had their crohn's triggered by antibiotics. so maybe that lowered the body's defenses in fighting this particular bacteria.
i know a few people with crohn's though, my dad and me included, and they seem to be a relatively healthy lot. my dad and i almost never get sick. you would think that most people with a regular, strong immune system would be able to fight something like that off. because if it's that prevalent (apparently in dairy and red meat) then a lot of people with weaker immune systems would be getting crohn's, right?
and why would there be a hereditary component if it was just a bacteria?
and wouldn't people with crohn's on immunosuppressants get worse if it was bacterial?

sorry, i'm just sort of thinking out loud.

i did a little googling of that john hermon-taylor, the one that started the research on the MAP link. supposedly he's been raising funding for research/vaccine since 2001. haven't read anything about it in the last 3 years. does he just not have $$ or is the research not going well? i read something that when they do the MAP treatments that it works in about 50% of patients, although some have relapses. no % on relapses. that seems like about the same success rate as imuran or the biologics.

 

[flowergirl]

That is correct, however, there are other TNFa blockers that are ineffective against Crohn's Disease. This study showcases the differences between one TNFa blocker that doesn't work and Remicade.

In the end, they're not completely sure why Remicade works, it's theoretical at this point.

isn't that weird? how certain ones work, and others don't, but they seemingly do the same thing?

 

[DustyKat]

FYI...

Matt's pathology, following surgery, showed he was negative for MAP.

Dusty.

 

[kiny]

why would there be a hereditary component if it was just a bacteria?

why wouldn't there be?


skip to 4:30

http://www.youtube.com/watch?v=B0lLR5dm4HU

i know a few people with crohn's though, my dad and me included, and they seem to be a relatively healthy lot. my dad and i almost never get sick. you would think that most people with a regular, strong immune system would be able to fight something like that off. because if it's that prevalent (apparently in dairy and red meat) then a lot of people with weaker immune systems would be getting crohn's, right?

that's right, my dad had Crohn's too

people with crohn's have been found to have a genetic NOD2 mutation
(this mutation is most common in whites, less common blacks and never found in asians (last I heard))

there is a link between NOD2 and the ability to fight off bacterial infections, shown in the paper I linked, the nature study, etc

however, the NOD2 mutation only limits your ability to fight off certain bacteria, not all, one of them is MAP

So far they have not been able to find MAP in every blood sample of Crohn's patients, but in a lot of blood samples they did find abnormal MAP levels. But finding MAP is not easy, and if they can't find MAP in a certain person doesn't mean they don't have it, the bacteria is intercellular and incredibly hard to detect. It's much easier to find tuberculosis in people.

i did a little googling of that john hermon-taylor, the one that started the research on the MAP link. supposedly he's been raising funding for research/vaccine since 2001. haven't read anything about it in the last 3 years. does he just not have $$ or is the research not going well? i read something that when they do the MAP treatments that it works in about 50% of patients, although some have relapses. no % on relapses. that seems like about the same success rate as imuran or the biologics.

there are other people trying anti-map treatment too http://www.centralfloridafuture.com/news/professor-patents-test-for-possible-crohn-s-disease-cure-1.2646645#.TpqUlrIR9Bk

the current method seem to be cocktails for tuberculosis, antibiotics that is, if it is MAP, it's the most straightforward method of trying to eliminate the bacteria, but not ideal

infliximab and humera are thought by some to be fighting MAP cells and together with our immune system is able to kill them, killing them all would be more difficult, but just like with tuberculosis one day it became possible to give people their life back

MAP also reproduces really slowly, it might explain why people have ups and downs and are able to be 'crohn free' for years

 

[handle]

There are now at least 30 genes which have been found to be associated with Crohns.
http://www.physorg.com/news/2010-11-gene-variants-linked-crohn-disease.html
quote from that link:
"In line with previous results, most of these genes are involved in the control of the interactions between the intestinal bacterial flora and local immune cells in the mucosa, and in the activation of what is known as the adaptive immune response."

from kiny's post above: "there is a link between NOD2 and the ability to fight off bacterial infections, shown in the paper I linked, the nature study, etc"

Kiny, you have not portrayed the information on your own link accurately. It clearly states that the NOD2/CARD15 gene (which is only one of many involved) quote..."suggests a link between immune response to bacterial components and development of disease."
(at 5:20)

Most researchers are actively looking for a pathogen, but they also believe that there is an abnormal response involved.

While it's normal for people to jump to conclusions and show a righteous insistence that their opinion is the correct one, some humility is always useful too.
The whole point of consensus views in the scientific field is to minimise the errors that an individual, or even several individuals, can make. I find it incredible that individual views, backed by perhaps a small amount of information, attempt to override enormous bodies of work that do exist. It doesn't mean that they are wrong, but humility, and caution, is necessary and wise - unless we think we are perfect.

 

[kiny]

I find it incredible that individual views, backed by perhaps a small amount of information

There are many more tests that show that crohn's is an immune deficiency than there are that confirm that crohn's is an autoimmune disease, in fact, I don't know of a single study that showed that crohn's is an autoimmune disease.




http://news.healingwell.com/index.php?p=news1&id=531200

Another study:


"Weakened Immune System May Cause Crohn's Disease

When you see a patient with Crohn's, you find they have a lot of inflammation, so it's been assumed that they have a hyper-inflammatory response, But we believe that the underlying problem is not hyper[activity], but failure of the acute inflammatory response."

"There have been other studies in the last year or two that Crohn's disease is really a problem dealing with bacteria in the colon and the inflammation is set up because there's more of a defective immune response to the bacteria in the gut,"




Another study:
http://www.ncbi.nlm.nih.gov/pubmed/21483259
"
The spectrum of congenital immunodeficiency disorders recognized to develop Crohn's-like inflammatory bowel disease is also expanding."



Another study:

"Crohn's disease: an immune deficiency state."

http://www.ncbi.nlm.nih.gov/pubmed/19437144



and there is another study that showed that crohn's patients do not react the same to bacterial infections as others, they have a weakened response, not a heightened response


show me how many tests there are that confirm crohn's is an autoimmune disease? right, 0


the idea that crohn's is an autoimmune disease and not a bacterial infection and weakened or disfunctional immune system stopped making sense when LDN was effective against crohn's

I'm not saying it's impossible that some crohn's patients do have an autoimmune disease, but it simply isn't what the tests show, they show the opposite, they all show crohn's is an immune deficiency.

 

[handle]

You've missed the point entirely kiny. I can't say it any clearer other than that your research is heavily biased and very incomplete.
There are some brilliant posts from "Kev" regarding LDN. His last one showed him to be a true gentleman and wise man. You should read it. You may learn not only you mistaken, but more importantly, that humility is vital.
I would have to say that "D Bergy" is the most respected poster about MAP bacteria. He is respected because he states that is his his opinion only, and he does his own research on himself! He is meticulous in his arguments.
Again I say, it is not about trying to be right, when there is not yet an absolute truth. Do you get it?
good luck.

 

[kiny]

You've missed the point entirely kiny. I can't say it any clearer other than that your research is heavily biased and very incomplete

lol, whatever, it's there black on white, I could link you 1000 studies and you would still say I'm wrong

you choose to be stubborn just to be right

suit yourself, I have no time for this, I am done

 

[handle]

I keep trying to help you kiny. As I said it isn't about being right, which is what you claim to be, and it isn't a black and white issue. You've chosen to only read select bits of information that suit your purpose.
You try to insult me by saying I choose to be stubborn just to be right, but I already accept I may not be right. I am not the one demanding to be heard about my Crohns theories!
good luck and kind wishes.

 

[D Bergy]

This is is difficulty with Crohn's disease is that there is some kind of immune system deficiency, abnormality, whatever you want to call it, that is not totally clear.

If any given treatment such as Imuran, LDN or whatever does not work for you, then you are left with little or nothing to really help.

I normally use LDN to control the disease and it worked well until I got infected with this Mycoplasma Pneumonia. I intend to go back on LDN once I have eliminated the Mycoplasma, but even taking LDN allowed me to get Mycoplasma in my intestines, and that only happens to people with a weakened immune system. I also have to take some blame myself, as I was not very diligent in taking the LDN and I also let my vitamin D levels come down.

I can only do so much about my immune system dysfunction, as I call it, but if the pathogen that causes a majority of the problem can be killed by some means, it would give me a normal life. Providing it is safe and effective.

I have had intestinal symptoms from two other pathogens, so far, other than the MAP bacteria. It is not a simple disease, but that does not mean it cannot be figured out enough to do something about it.

I had Stomach problems early on that were caused by H-Pylori. I had at least two negative tests for the pathogen, but one week of an alternative treatment specifically for H-Pylori rid me of the symptoms permanently.

After that episode I concentrated on the minor flare I had going on in the Ilium and lower regions. I responded negatively to E-Coli using one treatment method, but could not kill the E-Coli. The treatment would make me more ill, but would not resolve the problem I used a different method to kill the suspected E-Coli and eliminated the remaining symptoms.

Certain strains of E-Coli are suspected to work with the MAP bacteria by some researchers. I think they are correct at least some of the time, based on my own experience.

When you come to these conclusions, as I have, and real researchers that have way more credibility, you also have to be prepared to be wrong. I have been wrong a hundred times before I have come to my current conclusions, which could be wrong.

All this research, by everyone, is a work in progress, and it the answer is not simple, or it would have been resolved a long time ago. But every bit of it helps the puzzle.

Dan

 

[flowergirl]

MAP also reproduces really slowly, it might explain why people have ups and downs and are able to be 'crohn free' for years

but if it reproduces that slowly, why would you have flares and remissions? wouldn't it be more likely you would have a gradual increase in symptoms?

i'm no scientist. i'm just curious.

 

[kiny]

but if it reproduces that slowly, why would you have flares and remissions? wouldn't it be more likely you would have a gradual increase in symptoms?

i'm no scientist. i'm just curious.

the idea currently, as you can read from the study from Anthony Segal, is that the first phase is the bacterial infection (MAP is the most likely candidate, but not the only one), because our immune system is "defect" see NOD2 gene, this causes the initial inflammation

the second phase is that our body overcompensates, which is the immune response

(this is not an autoimmune disease, this is a immune deficiency in phase 1)


why flare ups can be short or long, even though the MAP bacteria reproduces so slow...I don't know

 

[flowergirl]

oh, and even what you say is true about the biologics somehow helping to "kill" this particular bacteria, what about all the other immunosuppressants that people do well on? imuran, 6mp? again, shouldn't these make symptoms worse?

 

[flowergirl]

the idea currently, as you can read from the study from Anthony Segal, is that the first phase is the bacterial infection (MAP is the most likely candidate, but not the only one), because our immune system is "defect" see NOD2 gene, this causes the initial inflammation

the second phase is that our body overcompensates, which is the immune response

(this is not an autoimmune disease, this is a immune deficiency in phase 1)


why flare ups can be short or long, even though the MAP bacteria reproduces so slow...I don't know

isn't overcompensation of the immune system the hallmark of autoimmune? if it were an immune deficiency then you would also be at risk for other illnesses. again, the people i know that have crohns are generally very healthy, aside from their guts.

 

[kiny]

if it were an immune deficiency then you would also be at risk for other illnesses

you are

It's in that Segal study I linked.

People with intestal trauma who had crohn's produced 7% less white bloodcells than people without.

When those same people were injected with a harmless bacteria, the crohn's patients had a blood circulation that increased by 4 times, normal people's blood circulation increased by 11.

Fast blood circulation is needed to protect yourself from bacteria, since the faster the blood circulates, the faster you can remove the bacteria.

 

[D Bergy]

You bring up a good point about blood circulation. People with Crohn's tend to have more blood clots, and in general seem to have "sticky blood". Thick blood provides a place for pathogens to avoid being destroyed by the immune system and even antibiotics.

I think an important part of a treatment program is to thin out the blood to eliminate this problem. One of many reasons I take Krill Oil, Tumeric, and Ginger on a daily basis to make the blood more viscous and thin it out some. These will also lower your blood pressure somewhat. No real downside to using any of these, but many possible benefits.

Dan

 

[kiny]

oh, and even what you say is true about the biologics somehow helping to "kill" this particular bacteria, what about all the other immunosuppressants that people do well on? imuran, 6mp? again, shouldn't these make symptoms worse?

I don't know every treatment, but you can clearly see humera and infliximab and LDN are the best treatments so far, just talking to people with crohn's in our clinic confirms this study

imuran, I took this also, seems to be far less effective as inflixmab, however, both used together seem to be better than only infliximab, is it because imuran stops infliximab antibodies? not sure

 

[kiny]

You bring up a good point about blood circulation. People with Crohn's tend to have more blood clots, and in general seem to have "sticky blood". Thick blood provides a place for pathogens to avoid being destroyed by the immune system and even antibiotics.

I think an important part of a treatment program is to thin out the blood to eliminate this problem. One of many reasons I take Krill Oil, Tumeric, and Ginger on a daily basis to make the blood more viscous and thin it out some. These will also lower your blood pressure somewhat. No real downside to using any of these, but many possible benefits.

Dan

when I had a flare up I went to the hospital and they had to take blood samples before they gave me infliximab, I had very low blood pressure and just getting one blood sample was very hard

I was very surprised, the nurse literally poked her with her needle in my vain and I didn't bleed.

There was also not enough water in my blood.

Now that I'm fully recovered my blood pressure is higher and I have normal water levels in my blood.

I don't know if this is related, but my doc keeps telling me to keep my blood circulation as high as possible.

 

[handle]

Oh dear, I hope no-one is actually being taken in by that completely non-scientific 'study' chart of effectiveness. I looked up 'Cure Together' and was not surprised to find the data gathered for the chart was a self-reporting system by 178 people, collected by people who don't follow any procedure to verify or screen information. Hence we have 6mp, Imuran, and Entocort rated much lower in effectiveness than fish oil or stress reduction Make of it what you will! And other alleged facts with no author or citation...
Flowergirl, your queries (which remain unanswered) are excellent.
And are we supposed to believe that nurses can prick people but they won't bleed if their blood is too thick. I give up!

 

[kiny]

Every single study in our hospital is done like that. You reply to a questionaire and you answer by a number 1-5, 5 severe, 1 not.

We don't have a fancy graph but the results are the same, humera, remicade and LDN are by far the best.

Want proof, boot up pubmed and lancelet and look for yourself.

 

[kiny]

And are we supposed to believe that nurses can prick people but they won't bleed if their blood is too thick. I give up!

this happens all the time, the reason is a lack of water in the blood, and getting samples can be really hard, I know because I take blood samples myself

a few taps on the arm is usually enough to end up filling the sample, otherwise you wait a bit between each sample

I have no idea why you are so hostile btw

 

[David]

I don't know every treatment, but you can clearly see humera and infliximab and LDN are the best treatments so far, just talking to people with crohn's in our clinic confirms this study

imuran, I took this also, seems to be far less effective as inflixmab, however, both used together seem to be better than only infliximab, is it because imuran stops infliximab antibodies? not sure

While it's neat and I like the idea, you can't post something like this and claim it showcases that "X is clearly better".

http://curetogether.com/blog/2011/09/20/crohns-study-results-29-treatments-rated-by-patients/

129 patients that are likely not randomized. A single link from a lowdosenaltrexone.org group or one doctor at an alternative clinic asking patients to fill it out or one doctor who always does the top down approach and asking patients to fill it out or one person who understands proxies and has an ulterior motive would completely skew the results.

And then there is the issue of "popularity". With 129 patients LDN is rated very effective but not very popular. Does that means 6 patients out of 129 tried LDN and had fantastic results? Without any hard numbers to look at, all we're seeing is a pretty graphic.

Again, it's a super neat system and I hope they continue to expand and improve it, but right now I don't feel it can be utilized to assert effectiveness of a treatment.

 

[kiny]

While it's neat and I like the idea, you can't post something like this and claim it showcases that "X is clearly better".

Well, what I said that studies show that infliximab, humira and LDN are clearly superior to other meds.

People asked to post more info and don't take any pubmed or serious publications serious because each time I link them one or tow people act like it isn't true.

Now.

If those people do not believe me that is fine, those same results can be found at pubmed and lancelot.

I just don't have the time atm to find them all and to sort them all.

The idea that I should find a publication for every single sentence I post here is ridiculous. No one did that in this whole tread BUT ME and each time I do people claim the researchers are wrong or I am wrong for posting it.

There is no helping some people.

If someone wants to prove or show, with publications from lancelot or somewhere else, and make a spreadsheet, that is fine, but I can't do everything. I have no time to do that.

 

[kiny]

I await the awesome publications, I'm out until then.

 

[David]

Well, what I said that studies show that infliximab, humira and LDN are clearly superior to other meds.

People asked to post more info and don't take any pubmed or serious publications serious because each time I link them one or tow people act like it isn't true.

If those people do not believe me that is fine, those same results can be found at pubmed and lancelot.

I just don't have the time atm to find them all and to sort them all.

The idea that I should find a publication for every single sentence I post here is ridiculous. No one did that in this whole tread BUT ME and each time I do people claim the researchers are wrong or I am wrong for posting it.

There is no helping some people.

My ONLY interest here is that people get as correct of information as possible. My issue with your posts is you're utilizing these studies incorrectly. For example, you post an abstract above stating:

Another study:

"Crohn's disease: an immune deficiency state."

http://www.ncbi.nlm.nih.gov/pubmed/19437144

When I click through to that study, what do I get if I read it?

A substantial body of data has emerged in recent years to suggest that the primary defect in Crohn's disease is actually one of relative immunodeficiency. This review considers the evidence for such a phenomenon in contrast to alternative prevailing hypotheses and attempts to address some of the potential paradoxes that it generates.

You're linking to that study stating that it claims Crohn's Disease IS an immune deficiency state. All that abstract says it that they're reviewing it. Where are the conclusions of the study? For all we know they found that it in fact was NOT an immune deficiency state.

My job is to protect the people who will invariably read a post but do not follow through to validate the posters claims but might take what is said as truth. At present, what you're posting is not being validated by the studies you're linking to.

 

[kiny]

you read the abstract, not the study

 

[David]

you read the abstract, not the study

Please link me to the study to read.

 

[kiny]

Please link me to the study to read.

you need to make an account, show you're a member of a school or university or tell them in writing you want access

 

[David]

you need to make an account, show you're a member of a school or university or tell them in writing you want access

I assume you have access since you're using it as a source. Please post the conclusions of the article.

 

[kiny]

Nod I have access through KULeuven, I can't post it unless I want to get my access revoked.

I have a feeling this is going too far, I'm done posting.

 

[RFarmer]

I kinda like we had a bit of attacking going on here. I enjoyed Kiny's responses to flowergirl's questions. There's no real need for "i give up!" and hating on someone's opinions. Furthermore, I don't find any real reason to be upset because kiny posted his opinion, on things that he found, and tried to help flowergirl. Even if you disagree with the validity of his chart, it's just a theory.

It's not like I'm going out to go buy some anti-MAP medicine on the black-market from something I see on Crohnsforum. It's an interesting read though.

 

[David]

I kinda like we had a bit of attacking going on here. I enjoyed Kiny's responses to flowergirl's questions. There's no real need for "i give up!" and hating on someone's opinions. Furthermore, I don't find any real reason to be upset because kiny posted his opinion, on things that he found, and tried to help flowergirl. Even if you disagree with the validity of his chart, it's just a theory.

If you're referring to me, I was not attacking Kiny. As I stated earlier in the thread, it is my job to ensure that the best possible information is being presented on this forum. There is a tremendous amount of misinformation on the internet and it is harming people. I have zero problem with MAP being postulated as a cause of Crohn's Disease or anything else that was opined in this thread. In fact, I think it's wonderful! But putting forth one's opinions also means you open yourself up to peer review on this site so that the mere opinion can be separated from fact. And whether you're able or unable to backup your assertions allows other people to make educated decisions based upon fact rather than opinion, something incredibly important when it comes to one's health.

 

[RFarmer]

> Not referring to you.

> awk. :sheep:

 

[handle]

"There's no real need for "i give up!" and hating on someone's opinions." quote from Nchuleftingth.

Are you having a dig at me? You must be joking! I was generous with Kiny, even after he insulted me at three times running.
There was no 'hating' whatsoever I assure you. And as David has said, and I agree, it is important for people to separate opinion from alleged facts. That 'chart' really was a step too far!
If you want to give commentary at least try to be fair and impartial, Nchuleftingth.

 

[flowergirl]

i hope i wasn't the one offending. i was just sort of thinking out loud. i have no answers. my theatre degree does not lend itself to scientific pursuits. :tongue:

 

[RFarmer]

i hope i wasn't the one offending. i was just sort of thinking out loud. i have no answers. my theatre degree does not lend itself to scientific pursuits. :tongue:

Flowergirl: You asked all the questions I had intended to Seeing as I was too lazy to actually look at anything, I just kinda read what you posted, and what kiny said in return. Very interesting. haha

Oh dear, I hope no-one is actually being taken in by that completely non-scientific 'study' chart of effectiveness . . . Flowergirl, your queries (which remain unanswered) are excellent.
And are we supposed to believe that nurses can prick people but they won't bleed if their blood is too thick. I give up!

This. This is what I'm talking about. I'm not joking either. I found it harassing, rude, and childish (especially to include flowergirl in your petty argument, seeing as she obviously did not want part of it). Furthermore, dismissing an anecdote of which you are ignorant? Too much. Whether or not you found it/find it in looking back to be offensive, that is your prerogative. But, as an outside opinion, this is what I took from your counter. No offense.

 

[handle]

I find your remarks towards me insulting, derogatory and quite offensive Nchuleftingth.

You don't seem bothered that I was accused of " spreading fud from Wikipedia.."
or being called "stubborn" and "hostile" by Kiny. Where's the balance in your commentary Nchuleftingth? Let's have some context here please.
My remarks towards Flowergirl were complimentary , and had nothing to do with any alleged argument.
That 'study chart' was an affront to all manner of science. It was highly misleading and completely erroneous. That doesn't bother you, and the insults I took don't bother you. You are making a personal attack on me that is uncalled for and misguided.

 

[handle]

I just noticed you didn't even quote my post correctly Nchuleftingth - you chopped it up and joined bits together. Now that's hardly fair. I don't mind criticism, it's how we learn, but make it accurate please.

 

[David]

I'm going to close this thread so everyone can cool down. In the end, none of this matters. We've all got much more important things to do.