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Crohn's Disease Forum » General IBD Discussion » Everyone with Crohn's needs to see this!


04-15-2012, 04:09 AM   #1
PomeSutton
 
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Everyone with Crohn's needs to see this!

http://www.youtube.com/watch?v=5pYuf...feature=relmfu

On m.a.p (mycobacterium avium paratuberculosis) and its relation to crohn's by pretty much the top guy on the subject.

Please watch all videos and tell me what you think.
04-15-2012, 06:39 AM   #2
Spooky1
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I think this subject has been bandied about for some time. Does seem to be some debate over this. Does look very interesting though, especially as the doctor is keen to pass on his knowledge over the internet. Shall watch the rest soon. Does it tell you in video ten how to cure it exactly. its what we all want to know.

thanks for the link
04-15-2012, 07:01 AM   #3
PomeSutton
 
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from what i gather they need funding to develop a vaccine which they arent getting. though i think there are antbiotics you can take that are anti-map though my doctor says these are not available in new zealand where i live, so what am i just supposed to sit around suffering for the next 5-10 years while they decide whether its worth funding a cure for us??!!!

I made this thread in an attempt to bring more attention to m.a.p because apparently it has been proven that m.a.p is atleast A CAUSE of crohn's so why isn't every person with crohn's treated for a m.a.p infection or atleast given the option or made aware of this?
04-15-2012, 07:17 AM   #4
PomeSutton
 
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here's a couple more links:
http://www.youtube.com/watch?v=GPO63...feature=relmfu
http://www.youtube.com/watch?v=crm4pKz6X2M
http://www.crohns.org/
04-15-2012, 08:46 AM   #5
SarahD
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This all sounds really promising. I was camping in a cows field just weeks before developing my first Crohn's symptoms, and since hearing about MAP I have always wondered whether there was a connection. I really hope the test and vaccine that Prof. Hermon-Taylor and his team are developing are the answer we're all hoping for!
04-15-2012, 09:11 AM   #6
PomeSutton
 
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Just before getting crohn's my route walking home changed to going past a field of cows where raspberries grew next to which i would pick and eat on my way home. (not the best idea in hindsight)
04-15-2012, 09:16 AM   #7
SarahD
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I'm reluctant to say that MAP causes all cases of Crohns, but there does seem to be a lot of evidence suggesting a possible causative link, at least for some cases.
04-15-2012, 09:29 AM   #8
PomeSutton
 
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i agree but i think its a large majority
04-15-2012, 09:49 AM   #9
Dazzafarr
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Of course it's related to bacteria.
The doctors who disagree are the same doctors
Who will put you on a steroid.
It's funny how every other stomach condition apart
From IBD,ceoliacs are related to a bacteria but
No.... Instead, we have the negligence of your common gastro
Who didn't discover it or doesn't have common sense
To link the two.
Why is crohns degenerative?
Some of our population process an understanding on how things work.
Others bandaid as they don't understand and don't want to understand.
"even doctors".
I work in IT however, I won't consider someone not
Knowledgeable of how to use a computer.
Majority of Doctors consider patients don't have an understanding...
Yet... My clients still know how to turn a pc on...
It's good to see people like this man. We needs more like him.
Less critical non-knowledgable doctors...
Honestly whoever came up with the term IBS should be shot
And spat on 20 times.
"another medical term for im diagnosing you with this
Because I'm an idiot".
Both colonoscopys I had I was told I had a lot of bacteria.
When I asked... What sort? They answerered - who knows....
Good work you "educated" idiot...
I was also told - it could be good bacteria...
Another good work....
At this day and age with the funding our medical associations
Should not only have cures... But we also should be well ahead of where we are.
All we have gained in improvements on previous prevention or medical management.
Thank god we have people who are actually getting somewhere
With the theory's and evidence.
You will find in Years to come a simple antibiotic will cure crohns.
04-15-2012, 10:09 AM   #10
PomeSutton
 
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agreed this bullshit is so damn frustrating. I somehow struggled my way into uni and now im on the verge of dropping out i cant wait any longer. Crohn's has already completely destroyed my entire teenage life i feel like ive suffered enough now but there's no end in sight even with this m.a.p due to funding and general ignorance. I feel so damn helpless.
04-15-2012, 10:15 AM   #11
Spooky1
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i've had to drop out of so many courses, Pome. yes, its life destroying and i'm having one of my depressed and crying days, cos joints hurt, abdomen hurts, completely exhausted, sore eyes, sore mouth, stomach ulcers and hideous terminal ilieum stricture with ulcerations and bleeding. and so on bog night and day. 37 years of this and i can't see any way forward. Disgraceful disease.

On video two, he was explaining that M.A.P has filtered through ground into water etc. so really we can't avoid it. its not just a question of avoiding dairly, is it?
04-15-2012, 10:18 AM   #12
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no but we can hope for a vaccine the sooner the better.
04-15-2012, 08:46 PM   #13
Beach
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Interesting video about MAP. Something that I've wondered about, and was lightly mentioned in the video, was where does the disease show up? And also why are some people more susceptible to a MAP infection over others?

I mention this as I read a book recently about tuberculosis bacteria. In it was the mention that TB of the lungs was largely an urban disease. In rural farm/ cow country tuberculosis was rarely seen, back in the day. This was in the 19th, early 20th century.

In another book I learned written by a dentist in the 1930s that he noticed people with crowded teeth, with many cavities, where much more prone to catching TB. Those with perfect teeth, and firm jaw lines pretty much were immune to the lung disease. The dentist also noted that poor teeth where found in those eating a modern diet poor in nutrition. Those that ate a traditional diet full of protein and vitamins, along with avoiding anti-nutrients, had very few cavities and little to no teeth crowding.

From observations the dentist was able to come up with a cure for cavities - or at least around 90% of cavities. What he would do is have patients eat a diet high in fat soluble vitamins (mainly from grass fed cow butter), and limit grain eating (or as one doctor showed in his testing, avoiding grains all together showed best results.)

With all the dental advertising we see on TV, one would think that cavities are caused by an overgrowth of bacteria in the mouth. Apparently this is only part of the story. In order to avoid dental cavities teeth need to be strong, resisting mouth bacteria from causing damage. And with proper nutrition - high blood circulating vitamin D3, high vitamin K2 intake, vitamin A, minerals, etc. it was possible to strengthen teeth, causing resistance to bacteria the dentists found.

I wonder if a similar approach is needed for attacking Crohns and MAP bacteria? Much like those with many cavities and crooked teeth of the 1930s being more susceptible to TB infection, maybe the body needs to be made stronger in order to resist MAP tuberculosis bacteria from causing damage. Just an idea I've kicked around.

FYI - here is on article about preventing and reversing dental cavity growth, along with another with testimonials of it working.

"Dr. Mellanby's Tooth Decay Reversal Diet"

http://wholehealthsource.blogspot.co...rsal-diet.html

&

"Dental Anecdotes"

http://wholehealthsource.blogspot.co...anecdotes.html
04-15-2012, 09:22 PM   #14
Dazzafarr
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You will find even cats get crohns disease.
Now from my understanding cats don't eat red meat.
They drink a lot of milk however.
How does a cat get crohns? What..
Doctors are going to say it runs in the family...
Doctors ignorance and stupidity is what's delaying a cure.
I worked majority of my life funding the government for what..
For my private health insurance not to cover
The pillcam and no real test with knowledge...
I'm sick of these gastro morons...
Pop you on steroids and away u go..
Nice work doctor tard....
I'm actually researching a bit while I'm off work.
I'm going to see what parasites kill map.
I'm going to start with researching salmonella.
One guy went to Thai land to have a type of
Parasite egg implanted in his body to fight
Crohns. I do believe that a parasite could fight map.
As these dumb shit doctors won't come up with it...
I guess that leaves it to us... Pretty sad.. Without
The tools or resources it's impossible.
However, we know the condition better than these idiots..
Why??? U have it... They don't..
I just love wasting away like this doc..
This is my idea of fun...
04-15-2012, 09:27 PM   #15
David
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You will find in Years to come a simple antibiotic will cure crohns.
No, you won't. Crohn's Disease is much more complicated than that.
04-15-2012, 09:37 PM   #16
tots
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This disease is a pain in the a$$ I agree. I am in the middle of a flare up don't feel great.I don't have a choice- I have to work. I got out of the hospital on a Tue at work on Wed.The drs take an oath to "do no harm". They are not going to treat Chrons without a care for the pt. The problem id not alot of people have Crohns so
its not on the top of the list for funding.

Dazzafarr-You can tell if your body is having an inflamitory process going on by a CBC. Your white blood count will be elevated- there will be WBC in different stages. Hence the use of steroids. Its also possible to have a flare up and no change in your white blood count.
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!

Last edited by tots; 04-16-2012 at 12:18 AM.
04-15-2012, 10:52 PM   #17
Dazzafarr
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Hey David,

Sorry, I don't mean to offend anyone regarding my views. E.g If there wasn't an antibiotic for salmonella then you would live with the problem.
Just my thoughts. Sorry all, I will keep my opinon to my self.
04-16-2012, 12:16 AM   #18
tots
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I dont think David said you couldnt state your opinion. He stated his very educated opinion.
Salmonella is not usually treated with antibiotics- it then makes you a carrier and that means you would spread it very easily. I found this out the hard way with my middle one. They had to treat an infected IV site and the Drs were very upset with the nursing staff for not taking care of it when we told them of the pain he was having. Its kinda like a cold in that it runs its course.
Everyone gets it in varying degrees.
04-16-2012, 12:34 AM   #19
Dazzafarr
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I tried checking David's profile to see if we was in the medical practice.
Is he?
04-16-2012, 12:52 AM   #20
Rebecca85
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Are you?
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Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
04-16-2012, 12:59 AM   #21
Dazzafarr
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Please don't be like that. That wasn't a dig... It was a serious question. If someone says "very educated opinion" I tried to put 2 and 2 together.
04-16-2012, 01:54 AM   #22
tots
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Dazzafarr-

David didnt claim that he was very educated. I did. I have read his posts- read his sisters bio. I have worked for a few Drs so I know he is on top of his game.

I am sorry you arent feeling well. I can tell by the tone of your posts you dont feel well.

I hope you are able to find the right Dr to help you soon.

Lauren
04-16-2012, 04:10 AM   #23
Dazzafarr
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Well anyway,
Have a read if you wish, quote "antibiotics"
http://www.shafran.net/crohn/RMATTreatmnet.htm
04-16-2012, 07:27 AM   #24
Beach
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Oh, Dazzafarr, I think it would be nice for Crohn's disease sufferers if antibiotics could be developed to rid the body of MAP bacteria - if that causes the condition. Maybe much like tuberculosis of the lungs, possibly something similar can be found for MAP. (I guess it should be pointed out also that TB of the lungs often migrates to the intestines causing diarrhea and sores.)

From a nutritional standpoint it does seem that nutrients can be helpful in fighting MAP bacteria. I'm not sure how definitive this study is, but recall this lab research in the research section on the sight.

"Vitamins A & D Inhibit the Growth of Mycobacteria"

http://www.crohnsforum.com/showthread.php?t=33666

And if MAP is a difficult to treat tuberculosis bacteria, fat soluble vitamin D3 in particular should be able to help fight against the infection.

"Vitamin D activates immune response to TB: study"

http://www.vitamindcouncil.org/vitam...-to-tb-study1/

Excerpt from the article from Dr. Cannell's article:

WASHINGTON Vitamin D is needed to activate the immune system's response to tuberculosis, said a US study on Wednesday that could lead to new treatments for the lung disease that kills 1.8 million people per year.

Researchers have long known that vitamin D plays a role in the body's response to TB, but the study in the journal Science Translational Medicine shows it must be present in adequate levels to trigger the immune response.

This finding could be crucial to efforts to treat the disease in parts of the world like Africa, because people with dark skin tend to be more susceptible to TB and also are more likely to have vitamin D deficiencies.

Even though people can get vitamin D through sun exposure, dark skin contains more melanin which shields the body from ultraviolet rays and also reduces vitamin D production.

"Over the centuries, vitamin D has intrinsically been used to treat tuberculosis," said first study author Mario Fabri, who did the research for the study while at the University of California Los Angeles and is currently at the Department of Dermatology at the University of Cologne, Germany.

"Sanatoriums dedicated to tuberculosis patients were traditionally placed in sunny locations that seemed to help patients -- but no one knew why this worked," he said.

"Our findings suggest that increasing vitamin D levels through supplementation may improve the immune response to infections such as tuberculosis."

Previous studies by the same research team found that vitamin D played a key role producing a molecule called cathelicidin, which helps the innate immune system kill the tuberculosis bacteria.

The current findings show that vitamin D is necessary for the T-cells, which respond to threats as part of the body's adaptive immune system, to produce a protein called interferon which directs cells to attack the bacteria.

"At a time when drug-resistant forms of tuberculosis are emerging, understanding how to enhance natural innate and acquired immunity through vitamin D may be very helpful," said co-author Barry Bloom, former dean of the faculty at the Harvard School of Public Health....
I forgot to mention this earlier, someone pointed this out to me a few weeks ago and I found it interesting. The popular Crohn's drug Humira, commercials of Humira are often shown on TV here in the US for Crohn's treatment, has a noted side effect. It is pointed out that Crohn's sufferers taking Humira are at elevated risk of developing, of all things, tuberculosis. I though that odd. TB of the lungs is nearly unheard of here in America. And yet sometimes the drug can bring on the infection. I'm not familiar with how Humira works. From the little I can tell, it looks like an immune suppressant. Possibly what is happening is people with Crohn's disease are more susceptible to TB bacteria. Or with a suppressed immune system possibly what is happening is MAP bacteria, possible cause of Crohn's, are able to find their way from the intestine to the lungs. Then again would imagine TB of the lungs probably shows up differently than MAP bacteria in tests. Hard to say, thought it interesting, but then again it might not mean much of anything.
04-16-2012, 08:16 AM   #25
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I'm really sorry that you are going though a terrible time at the moment and crohns disease can be so hard to live with. One thing I don't believe is that doctors are stupid and I believe a lot do care about their patients and alsI want the best for them. The GI's I see are always helpfull give me a lot of options on what I can do and they also keep up to date with studies that are being carried out looking into crohns. This is their job to do so and I trust my doctor to be able to give me the best options for treatment as this is their speciality. Yes It may be in years to come they may find something new about crohns disease and treatment may change but this has happened with a lot of illness' and diseases, it's just the natural progression of medicine. What the doctors are doing now are treating you with what they think is going to help you the most from all of the facts and knowledge they have.
I hope whatever you decide it works and you start to feel better
04-16-2012, 09:16 AM   #26
tots
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Humira lowers your ablity to fight infections. TB being one of them. It dosent cause TB. It is also more common in the US than you might think. (just like whooping cough is making a come back. More people are not vaccinated against it).
04-16-2012, 09:17 AM   #27
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i think masive changes will come in ten- twenty years with nanotecnology its going to compleatly change medication treatments and diagnosis in so many ways. and cure loads of ilnes,s... antibiotics are not strong now but with nano tecnology there %%%%stronger not saying this will be the cure..

I just belive all the really really big changes and advances come with the nano technology
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04-16-2012, 10:06 AM   #28
David
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Hi Dazzafarr,

No, I'm not medically trained by any institution, I'm working to train myself Based upon what you said in this post regarding doctors, I assume that's a good thing. But anything and everything I say should be double checked with with a medical provider, never blindly follow my advice. For that matter, I'm also a fan of second opinions when a doctor makes an important suggestion.

Now, I believe that antibiotics of the future (and present) may help to control Crohn's Disease but it won't be a cure because, as stated, Crohn's Disease is much more complicated than mere bacterial infection, though bacteria absolutely play a role. I believe that MAP may indeed be a trigger and make Crohn's Disease worse in some individuals.

As an example of the complexity, let's just look at the NOD2 gene, one of the more than 25 genes so far implicated in Crohn's Disease. I bring this up only because our Science Advisor has been trying to teach me about it Anyway, NOD2 has mutated in a large percentage of people with Crohn's Disease. When NOD2 sees something in bacterial cell walls (not just MAP, any bacteria with this) called MDP, it upregulates something called NFkB. Problem is, when someone has Crohn's Disease they're invariably deficient in NFkB. Now, this is a problem because NFkB causes other genes to do important things like regulating innate and adaptive immune response and activation of T cells so bacteria get out of control and the vicious cycle begins. Oh, and you can have more than one type of mutation on the NOD2 gene.

Antibiotics may help control Crohn's, but they're not going to cure the problem just as not eating gluten doesn't cure Celiac Disease. I pray that I'm wrong and a cure is so simple as the correct antibiotic being developed, but all signs point to Crohn's Disease being an extremely complicated disease with many contributing factors, often different by individual.
04-16-2012, 12:08 PM   #29
Dazzafarr
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I want to go to hospital now but I know they will push me back... I'm in a lot of pain right now. Im stopping colostrum tomorrow...
I think it's making things worse..
Nervous system has flipped...
Pain in stomach is actually pretty bad..
I usually tolerate it quite well.,
Man, this sucks, anyway,
David, just wanted to reassure you I meant no harm
In my question if you were in the medical profession.
I agree that there will be more types of theropys involved and other drugs as a "cure" in the future. Well, I maise well unpack my bags and take a seat, this is gonna be a long journey. Sorry for how my post is displayed - my phone does this.
04-16-2012, 03:22 PM   #30
tots
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Dazzafarr- if you feel you need medical care keep going back
At some point they will take notice. You know your body best
If you stay at home you may get into more trouble. Do you live
with someone ?? Can they go with you ?
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