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


 
08-02-2012, 01:16 AM   #61
kiny
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Kiny

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

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

Lauren
Then don't! If you don't think I'm hopping to your liking then ignore me, all I did was reply to someone who bumped an old thread, do and believe whatever you like. I never said I was kind or good at communication or reasonable, and sorry if that's not what you want to see, I can't change what I believe in for the sake of respect, people with crohn have been doing that for years, enough for me.
08-02-2012, 01:29 AM   #62
Tenacity
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To keep us focused on the subject of discussion, here is another except from Dr. Greger's paper:

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

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

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

End of quote.

None of us know what causes Crohn's disease, but I feel there is sufficient evidence for us to heed the warning, and take a close look at what we are eating, and how we prepare it - namely, dairy, meat, and tap water - all of which carry the MAP bacteria.
08-02-2012, 01:44 AM   #63
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Here's what happens to monkeys (if you want the full text, it was published in a book with papers, you can find in most online bookstores, I don't know where the second study is in full)

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

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

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


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


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

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




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

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

In recent years, Mycobacterium avium subspecies paratuberculosis (MAP) has emerged as major animal pathogen with significant zoonotic concerns, worldwide. MAP infection is endemic in domestic and wild ruminant population in India. However, information on MAP infection in free ranging animal species and non human primates is limited. Present study aimed to estimate the status of MAP infection in free living Rhesus macaques suffering with multiple clinical conditions (coughing and loose stool). A total of 25 stool samples were collected from six colonies of Rhesus macaques from Mathura region (North India) and screened for the presence of MAP, using microscopic examination and IS900 PCR, directly from stool samples. PCR positive DNA samples were further genotyped using IS1311 PCR-restriction enzyme analysis. Of the 25 stool samples, 10 (40.0%) and 2 (8.0%) were positive for MAP using microscopic examination and direct IS900 PCR, respectively. IS900 PCR positive DNA samples were genotyped as 'Indian Bison type', which is a major MAP genotype infecting domestic and wild ruminant species and human beings in India. Prevalence of MAP in Rhesus macaques (Indian monkeys) was moderately high and confirmed interspecies sharing of MAP between domestic livestock and non-human primates. Presence of MAP in non-human primates, support the etiological role of MAP in inflammatory bowel disease patients. Indian monkeys may serve as model for understanding the role of non-human primates in sustenance, transmission and pathogenesis of MAP infection.
08-02-2012, 02:23 AM   #64
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Well, maybe this should be a different topic, but I like to give my opinion like this.

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

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

Seriously they just see your bowel is red and say 'you got crohn's'. How the hell do they know? If I don't wash my penis and wear the same underwear everyday, it will be red and full of spots as well, this doesn't mean i have chlamydia or smt. Every part of your body will inflame if you just don't care about it. Why should the bowel be different?
08-02-2012, 02:37 AM   #65
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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.
footnote: As far as I am aware, the Lancet is one of the world's most respected medical journals.
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08-02-2012, 09:05 AM   #66
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@Gra - yes, the Lancet is a highly reputable journal. I do think this is a particularly useful thread with respect to Crohn's categorisation ( if we all keep working away at it we may come up with some medically useful information!)
A couple of observations, based on personal experience:
- around 2000-2005 I experienced a lot of URTI's, with many repeated courses of antibiotics for persistent sinus infections ( I work in operating theatres, wearing masks for extended periods. So any cold/viral bug is "re-breathed" under a surgical mask)
-CD diagnosed 2005. Since then I have had almost NO respiratory tract infections (kids have grown up, but I now catch 10-20% of viruses presented to the household)
So, 2 comments:
i) were the repeated URTI's a prodromal immune alteration?
ii)does my more recent resistance to viral "bugs" represent a dysregulation of the immune system?(rather than an "auto-immune" condition?) In the case of flu-like illnesses I seem to be somewhat hyper immune at present.Conversely, a course of antibiotics will definitely stir up my CD..
Would welcome any thoughts


HD
08-02-2012, 10:03 AM   #67
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If people are really interested in this, here is a recent study linking MAP to T1D:

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

http://www.hindawi.com/journals/cdi/2012/785262/

"We demonstrated for the first time that Mycobacterium avium subsp. paratuberculosis (MAP) is present at the onset of T1D in a cohort of italian patients outside Sardinia. This raises some concerns regarding the diffusion of MAP and its possible involvement in triggering T1D."


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

If it's not MAP then it's not, but if it is and GI, big pharma and some advocacy groups for farmers are purposely trying to keep the lid on this kettle then they are irresponsible towards their patients.
Interesting on two counts: Pharma companies should want control if it's an antibiotic fix even in a significant population of patients. Of course it's the old thing of whether it's more financially beneficial to come up with the cure or leave it a chronic condition so the cash flow is continuous. You can't be a business if you don't have a continual consumer need. Investors don't like that.

Second interesting point is that I lived off the Northern coast of Sardinia for two years (of course that was 30 years ago). Just a very odd connection to that study.
08-02-2012, 10:49 AM   #68
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Kiny,
Just wondering why you are being so hostile? Alot of people on this forum cannot take stress without it affecting them in a bad way. Your anger is causing me stress. I am very sensitive. So please be kind to everyone. Thankyou
Teresa
08-02-2012, 10:58 AM   #69
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Well, maybe this should be a different topic, but I like to give my opinion like this.

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

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

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

I am fairly new, and just read your article. I have crohn's and never really used much sugar and was into whole grains for years now. If I were to choose, it would've been salty snacks over sugary. But, it maybe different for every person who has crohn's. Just like I can eat alot of things others can't and have no problems. Sugar is bad for you. A month ago I cut out all sugar including sugar and sugary substances (high fructose corn syrup)in products, preservatives as much as possible. No bottled dressings etc... No white flour at all. I have lost ten lbs as of today just by doing this. So, even though you may think you don't eat sugar, it is in everything that isn't fresh fruits and veggies etc...
08-02-2012, 11:10 AM   #70
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Kiny isn't being hostile now. This is an old thread that someone bumped. Kiny is passionate about his beliefs. I, for one, really appreciate the topics he brings up and he has made several good points. He encourages critical thinking. It's something all patients should do instead of being blindly obedient to their doctors.


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

As far as it being Crohn's or Crohn.... stop nitpicking. At least it is spelled correctly
08-02-2012, 11:12 AM   #71
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So here's something my brother brought up about MAP that I think is interesting and needs to be studied:

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

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

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

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

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

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

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

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

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

As for motivation behind that, I'll say it again - chronic diseases offer a continuous supply of repeat consumers. Cures do not. Investors want repeat customers and businesses cannot continue without investor or financial analyst support. Only philanthropists throw money at studies like this because it's the right thing to do.
08-02-2012, 11:27 AM   #72
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I agree with ctrl z. Kiny has obviously done a lot of research, and spent a lot of time on the subject, and just gets a little frustrated when someone comes along, without even reading the literature, and posts a theory blowing all these documented studies out the water.

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

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

Maybe Kiny can tell us what type of test to ask for, and we can all share the results? I think it would be very interesting.
08-02-2012, 12:30 PM   #73
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"If MAP is so prevalent - and it is - then why are only certain people getting Crohn's and the like? the presence of MAP to why it triggers Crohn's in some but not others." End quote.

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

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

Last edited by Tenacity; 08-02-2012 at 01:09 PM.
08-02-2012, 01:02 PM   #74
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Interesting so I thought I would share -

http://www.notmilk.com/lawbreakers.html
08-02-2012, 01:19 PM   #75
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Let me ask you, what does autoimmune mean to you in relationship to crohn.
Well, to me it means that due to a perfect storm of circumstances (both genetic and environmental) my body allowed the breakdown of my immune system.

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

The constant assault of inflammation, white cells, and antibodies combined over time led to scarring and damaged function of my small intestine, large intestine, joints, and liver.
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08-02-2012, 01:24 PM   #76
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Well said Mountaingem!
08-02-2012, 02:16 PM   #77
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That doesn't mean 6MP or TNF blockers are a good way to stop a pathogen though, it's just that they see it's stopping MAP (maybe on an insignificant level though), they see this in almost all successful crohn medications. But coming off the medication and the long term use of medication might actually end up helping MAP

Immune modulators like 6MP and TNF blockers could be making the disease both better and worse, the paradox that an immunesuppressant might actually stop a pathogen in the short term but help in the long term
kiny - I've read or watched on youtube about how immune modulating/tnf drugs can induce apoptosis and I guess kill some of the map in the process. However, I've not read or watched on youtube any comment that long-term use of these drugs can benefit the map bug over time. This in contrast to what I've read about the use of antibiotics, which may enable map to become resistant to the drugs. Have you read/watched anything that actually suggests what you said, namely that immune-modulating drugs show some tendency to strenghten the map's virulence over time?

Also, do you have a feel for what the current status is for the development of a map-testing kit, as well as the status for the development and testing of a map-vaccine? I noted that John Hermon-Taylor seems to be working on both of these items in London, England. I've seen him on some web sites where he periodically posts a tiny little blurb, nothing really substantial, but he says he's working on these things, getting very close, and asking for financial donations from anyone who will give. Is he for real? Do you know whether his efforts are indeed close or sound?
08-02-2012, 05:05 PM   #78
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Mark - to answer your question about the current status for the development of a map testing kit, and the development of a vaccine.

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

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

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

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

To read the full article, here is one link:

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

Perhaps someone else can update us on the progress of a vaccine from John Hermon-Taylor.
08-02-2012, 06:28 PM   #79
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Not helpful that they don't say which antibiotics are in RHB-104.

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

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

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

Still hoping it's not an infection since my past with antibiotics has been pretty harrowing. I'd be happy for everyone else, but sad for me.
08-02-2012, 06:47 PM   #80
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My autoimmune disease hurts...
08-02-2012, 06:51 PM   #81
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My autoimmune disease hurts...
Exactly Ethan!
08-02-2012, 08:10 PM   #82
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[QUOTE=Mark in Seattle;481063]
That doesn't mean 6MP or TNF blockers are a good way to stop a pathogen though, it's just that they see it's stopping MAP (maybe on an insignificant level though), they see this in almost all successful crohn medications. But coming off the medication and the long term use of medication might actually end up helping MAP

Immune modulators like 6MP and TNF blockers could be making the disease both better and worse, the paradox that an immunesuppressant might actually stop a pathogen in the short term but help in the long term QUOTE]

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

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

http://www.ncbi.nlm.nih.gov/pubmed/16503465

"Defective acute inflammation in Crohn's disease: a clinical investigation.

Department of Medicine, University College London, London WC1E 6JJ, UK.

In Crohn's disease, a constitutionally weak immune response predisposes to accumulation of intestinal contents that breach the mucosal barrier of the bowel wall, resulting in granuloma formation and chronic inflammation. Polymorphisms in CARD15 do not underlie this phenotype, but incapacitate the NOD2 pathway that can compensate for impairment of innate inflammation. Current treatment of secondary chronic inflammation might exaggerate the underlying lesion and promote chronic disease."




This study says that treating the secondary effect of crohn might make it eventually worse because it's just targeting the inflammation, not the cause of the inflammation. And if crohn is an infection, lowering the immune system does really not seem like a smart idea.

But when they do tests with 6MP in vitro and infliximab in vivo (the ones I linked) MAP does not increase, it's pretty stable for 6MP and in infliximab it goes down (at least in the first 24 hours, then it levels out and equals controls with MAP (some controls without CD have MAP too)). At least in the short term. But because MAP is so hard to detect and knowing how prevelant MAP is in a person seems really hard I also wonder how accurate those studies are.

(that MAP lowers within the first 24 hours of TNF-blocker use, is just one single study, and they did not check what happens after that iirc)

But with tuberculosis, also a mycobacteria, this doesn't happen at all, tuberculosis goes out of control really fast with a TNF-a blocker, it reproduces very fast if you use a TNF-a blocker, that's why they do that mantoux test and many clinics also do an Xray of your chest to make sure you don't have TB, before they use it. You can't start a TNF-blocker before they check this for that reason.

But with MAP this doesn't happen. Why, I don't know, MAP first of all reproduces much much slower than TB, if MAP does increase you wouldn't be able to tell very well, but like you said, 6MP and TNF-blockers are apparently able to induce apoptosis. I don't know what the end result would be, would apoptosis of macrophages be enough to stop the spread of MAP, but why then do people not improve in the long term, take someone off a TNF blocker and many get sick pretty fast again, some get long term remission, but many do not, so if MAP is causative, apoptosis in those first 24 hours after you get infliximab doesn't seem to have a lasting effect.

This is what I read, I think they don't know what the effect is, on the one hand they see apoptosis, but on the other hand some studies warn of long term effects.

Last edited by kiny; 08-02-2012 at 11:58 PM.
08-02-2012, 08:28 PM   #83
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Also note that in some healthy controls they also see low levels of MAP from time to time, and those people do not end up getting crohn's disease, so they are able to deal with the pathogen and clear it since it doesn't cause a long term effect on their health.

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

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

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

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

(also, they see an immune response directed at MAP in people, including in people with crohn's disease, so our immune system knows it's there, and is trying to clear it, which makes the theory that MAP is the reason for the inflammation much stronger, MAP is seen as an invader, it's also why I asked why people are mixing up attacking harmless bacteria and infection, it's not the same thing for me, MAP is not a harmless bacteria that just enters our body without repercussions, no we mount at attack against it, so do "healthy" people without CD)
08-02-2012, 09:02 PM   #84
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Here is an excerpt from this link, which indicates the 3 antibiotics in RHB-104

http://www.digestionblog.com/redhill...rohns-disease/

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


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

http://www.ncbi.nlm.nih.gov/pubmed?t...22%5BAuthor%5D

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

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

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

http://www.ncbi.nlm.nih.gov/pmc/arti...3/?tool=pubmed
08-02-2012, 09:07 PM   #85
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Some information about the trial and the lead investigator for RHB-104 in Houston, Texas:


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


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


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

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

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

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

Prof. David Graham, MD, RHB-104 Lead Investigator said today: "I am delighted to have been appointed as lead investigator for RedHill Biopharma's upcoming RHB-104 US pivotal trial. I am impressed with the Company's drug development team and enthusiastic about testing RHB-104 in the contemplated trial. For more than 25 years we have worked toward finding the cause of Crohn’s disease. Finally, we will be able to directly test a drug which may prove the hypothesis that one of the causes for the disease is MAP infection. The opportunity to support the development of this revolutionary drug is extremely compelling and I am hopeful that RHB-104 will benefit Crohn's patients around the globe."
08-02-2012, 09:10 PM   #86
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Thanks.

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

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

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

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

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

I can't find a study that shows this of crohn, but I can only assume it might be a similar effect.
08-02-2012, 09:10 PM   #87
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Not helpful that they don't say which antibiotics are in RHB-104.

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

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

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

Still hoping it's not an infection since my past with antibiotics has been pretty harrowing. I'd be happy for everyone else, but sad for me.
ZM-109 - Are you allergic to antibiotics? If so, do you know which ones are ok for you? I could try to find out which antibiotics are used in RHB-104 for you.

Also, could you tell us more about what you witnessed in the farming industry? Did you ever see things that looking back at it now, would make you think it was unsanitary for human consumption? Were there stringent inspections and rules to abide by in the agricultural industry when producing foods for human consumption?
08-02-2012, 09:21 PM   #88
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(hope no one takes this as a sign to actually take this stuff because this is about animals with Johne's disease)

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

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




(they don't actually do this in practice though, animals get vaccinated first and if they get sick they get killed, antibiotics are much too expensive for them for cows, but many tests see how effective antibiotics are on cows)
08-02-2012, 09:29 PM   #89
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ZM-109 - Are you allergic to antibiotics? If so, do you know which ones are ok for you? I could try to find out which antibiotics are used in RHB-104 for you.

Also, could you tell us more about what you witnessed in the farming industry? Did you ever see things that looking back at it now, would make you think it was unsanitary for human consumption? Were there stringent inspections and rules to abide by in the agricultural industry when producing foods for human consumption?
I'm allergic to Penicillin, E-mycin and Cipro. They won't give me any form of cillin or mycin because of the severity of my reaction to them. So Clarithromycin would be off the table for me. The other two I'm not sure about. Sometimes the names don't clearly define what they are - for example Zythromax is a form of mycin and I can't take it.

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

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

But for now, it looks like RHB-104 is off the table for me.
08-02-2012, 09:45 PM   #90
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Here is an interview with Borody about MAP and crohn, it's really detailed and he answers a ton of questions. Even if you question some things or don't agree, it is an excellent interview. (watch all parts, there are multiple)

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

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

Some critiques about his study are fair to make though.

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

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