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Crohn's Disease Forum » Books, Multimedia, Research & News » MAP Vaccine Ready for Human Trials - Could be Used for Crohn's


 
06-13-2014, 10:38 AM   #271
lbligh
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Hmm, that confirms that MAP is hard to kill and lurks in the body. I suppose the MAP vaccine would be instead of antibiotics and would take a while to do its job, but I am not sure.
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My 13-year-old daughter was diagnosed with Crohn's 12/2013, via endoscopy, colonoscopy biopsy, and MRE.

After four months of little improvement with Pentasa and Prednisone, we tried the Specific Carbohydrate Diet. Almost overnight, all the symptoms resolved. Currently off all meds. Bloodwork is completely normal.
06-14-2014, 06:31 AM   #272
sir.clausin
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Attention: Do we have any members on here who can translate an informationsheet from English to Norwegian regarding MAP? Please send me an PM. I did the Swedish translation and it´s for the upcoming Anti-MAP homepage regarding the vaccine.

thanks
06-20-2014, 01:38 PM   #273
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Take a look at very informative infographic on the subject:

https://www.facebook.com/crohnsmapvaccine
06-20-2014, 04:44 PM   #274
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I have a request!

I don't have a Facebook account but is there any way someone could ask the vaccine people:

'What can we do now - until the vaccine is done. Should we be boiling water, only drinking UHT milk etc?'

Perhaps there's something we can do to limit our exposure to this pathogen. Maybe, at least for some of us, we can clear it in small volumes and limiting our exposure may help?
06-23-2014, 12:19 AM   #275
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if map is involved or if limiting MAP is helpful after someone would be infected etc

But I think yes, if you boil water at boiling point for 20 seconds or more you porbably would kill the MAP I think. MAP is very heat resistant, but it's not going to survive boiling for very long. Pasteurisation happens at below boiling point for like 10 seconds. Some people claimed it killed MAP, but they regularly find MAP in boxes of milk from the store. While some MAP does get killed during pasteurisation, as they have shown, not all of it is killed. People don't like the taste of heated milk so they don't pasteurise milk properly.

I don't drink milk anymore, but I always used to heatl it when I made hot coco until it had a skin on top.

Last edited by kiny; 06-23-2014 at 12:34 AM.
06-23-2014, 12:45 AM   #276
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I don't know how much if any MAP would be present in bottled water. It is present in water reservoirs since the feces of the cow end up infecting the soil. MAP is present in some plants. But water is treated after that, not sure if MAP would would end up in bottled water like it does in milk boxes, it is in milk boxes for sure, many studies about it. It's been found in milk powder for babies too. 1 out of 3 baby milk powder formulation in Europe had viable MAP in them. MAP is much much more widespread than governments are willing to admit.

I'm always amazed at the lack of coverage this gets. People scream bloody murder when there are traces of mercury or traces of e coli in animals. And here you have a mycobacteria in milk and baby powder milk, that has been shown for decades now, and no one seems to care.
06-23-2014, 01:30 PM   #277
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I only drink UHT milk which is much more effective than pasteurisation. Our water is always filtered and foods with milk in it, apart from dark chocolate (!), are always cooked in the oven.

I also have a theory that a normal stomach bug for the rest of the family causes a flare for me. So I'm extra careful about making sure hands are washed etc. etc.

I'm not surprised people don't seem to care - I don't think they know! I didn't before I got Crohn's. I wonder why any MAP vaccine can't be used in farm animals to reduce exposure there...
06-23-2014, 01:34 PM   #278
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I wonder why any MAP vaccine can't be used in farm animals to reduce exposure there...
It is quite possible the vaccine will be used on animals if the cost of manufacture is low enough

06-23-2014, 03:23 PM   #279
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Perhaps governments could mandate its use if it were reasonably priced? Would it need to be used indefinitely or would a couple of years eradicate it?
06-23-2014, 04:26 PM   #280
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In the West (US-Europe), if your cow or herd has MAP you are on your own, you are required to report it but you get no compensation as I understand it.

In Japan for example, if you tell the government your cow has Johne's Disease, you get money from the government for the value of that cow as if it were a healthy cow, and the cow gets slaughtered.

There is no incentive in the West to even report your cow has MAP. The only reason it does come to light is because when you sell the cow cross border, the new owner wants to check the cow and they often check for MAP, because MAP affects the milk output of the cow and one cow is enough to infect his whole herd, since cows give MAP to one anohter through their feces.
06-25-2014, 08:27 AM   #281
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Crazy stuff.

Let's hope the vaccine gets the funding it needs. Sounds like it stands a good chance of working.

I wonder about the funding though. I'm donating towards it, and am proud to do so, but as I understand it there's a limited company set up which owns the technology.

I hope that we won't fund the thing and then find that the company will make billions for its investors and make access to the vaccine very expensive or difficult to those in different countries!
06-25-2014, 10:31 AM   #282
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Professor Herman Taylor's site is now live:

www.crohnsmapvaccine.com

Some of your concerns about contributing to funding the vaccine may be answered here. I, too, am donating, and very proud to do so.
06-25-2014, 10:38 AM   #283
JMC
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I wonder about the funding though. I'm donating towards it, and am proud to do so, but as I understand it there's a limited company set up which owns the technology.

I hope that we won't fund the thing and then find that the company will make billions for its investors and make access to the vaccine very expensive or difficult to those in different countries!
The intellectual property to the vaccine is owned by HAV Vaccines Ltd. Details are on the website. The company will not be funded by donations but by investors. Donations will be used to develop the MAP diagnostic test. I am 100% sure, having met Prof Hermon-Taylor, that his driving motivation is to cure Crohns, not get rich, so I am sure the company will behave ethically.
07-02-2014, 11:59 AM   #284
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So is this or SSI Vaccine promising?
07-02-2014, 12:04 PM   #285
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Both are really interested, but the MAP-vaccine is not being teste now so..
SSI is being tested, som great results obvoisly
07-03-2014, 12:24 AM   #286
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The intellectual property to the vaccine is owned by HAV Vaccines Ltd. Details are on the website. The company will not be funded by donations but by investors. Donations will be used to develop the MAP diagnostic test. I am 100% sure, having met Prof Hermon-Taylor, that his driving motivation is to cure Crohns, not get rich, so I am sure the company will behave ethically.
So they can afford the vaccine but not the diagnostic tool? ??


Why would the diagnostic tool be declined when applying for funding, theres zero risk for diagnostic purposes...

I'm pretty sure they are looking for funding for vaccine trials in humans as well as the diagnostic tool.
07-03-2014, 09:45 AM   #287
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Every month I've donate to Professor Hermann, stop talking and donate too!
I'm from a third world country.
07-03-2014, 09:49 AM   #288
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onolox: watch your attitude! If you are truly are giving money, then thats great. However you have no clue who we are and what we do.
07-03-2014, 05:44 PM   #289
JMC
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Every month I've donate to Professor Hermann, stop talking and donate too!
I'm from a third world country.
There are lots of people on this forum who have donated money and time to help this cause. I see you are from Brazil, I am sure Amy Hermon-Taylor would love to have someone in Brazil on the support team, just get in contact via the website or Facebook page.

I agree though, we need to do more. If everyone donated just 5% of their net monthly income the diagnostic test would be fully funded which in turn would help to get the investment needed for the vaccine. Such small sums of money from many people would make a tremendous difference yet have so little downside on the day to day life of the person donating.
07-04-2014, 01:15 AM   #290
Malgrave
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Onolox: would you be interested to set up a JustGiving page for Brazilian crohnies for raising money for Crohn's MAP vaccine? And of course to raise awareness about this in Brazil! We have Portuguese info sheet available on the Crohnsmapvaccine website.

Take a look at Crohn's MAP Vaccine Heroes site on Facebook !
07-05-2014, 12:24 AM   #291
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I wonder if simply straying from Beef, Milk, and Dairy products would improve symptoms.
07-05-2014, 02:03 AM   #292
sir.clausin
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Poppysocks: Well, since we already got crohns, the MAP are inside and is not going to move unless a vaccine or a shitloads of antibiotics does the trick. Then again, if the professor is right about MAP being in the water and air too then we are pretty fxxked unless we get our "blind" imunesystem up to speed.

I would say thay dairy is anything than good for us, besides Häagen Dazs (ice Cream) that is ;D
07-05-2014, 02:58 AM   #293
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I wonder what the minimum amount to "invest" in the vaccine would be?
07-05-2014, 07:08 AM   #294
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IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.

It says what the total required is, but it'd be good to see how far along everyone is. I remember they used to do that when trying to raise money on Blue Peter It'd be good if it updated in realtime too - so people could see their donations pushing it higher. Maybe even a realtime scroller for 'last donations' or something!
07-05-2014, 07:20 AM   #295
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I'm dubious. The theory that some bacteria or virus caused IBD has been around a long time with no success in treatment.
I suspect its opportunistic, just that the inflamed tissue from Crohn's gives it a favorable habitat.
07-05-2014, 08:06 AM   #296
JMC
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I'm dubious. The theory that some bacteria or virus caused IBD has been around a long time with no success in treatment.
I suspect its opportunistic, just that the inflamed tissue from Crohn's gives it a favorable habitat.
There has been a lot of success with treating MAP with antibiotics by a number of doctors in different countries. There is currently a trial going on, called "RHB-104". It will be interesting to see their results when they are published. I do not believe antibiotics are the long term solution however, hence the need for the vaccine.

I have heard the claims that it is an opportunistic infection before, but as with the claim that treatment has not worked, I have not seen any scientific papers published to support that claim. (There was an often quoted antibiotic trial in Australia which did not produce great results but the science was flawed and the results when analysed properly were actually quite good)

Last edited by JMC; 07-05-2014 at 11:58 AM.
07-05-2014, 09:48 AM   #297
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IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.

It says what the total required is, but it'd be good to see how far along everyone is. I remember they used to do that when trying to raise money on Blue Peter It'd be good if it updated in realtime too - so people could see their donations pushing it higher. Maybe even a realtime scroller for 'last donations' or something!
They did the same thing in the Ron Paul Moneybomb campaigns and I agree it's a good idea to be able to see how close we are to hitting the target. If they could give everyone a certain day, and market it throughout the internet and everywhere else as much as possible I think they could increase their donations.
07-05-2014, 10:00 AM   #298
JMC
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IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.
I think it is a good idea. Does anyone else have any thoughts about what they would need to know in order to make a substantial donation?

07-05-2014, 01:11 PM   #299
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I don't understand why there is no link between MAP and UC, but there is definitely one between MAP and Crohns. So I guess UC is caused by something else? Not saying I have UC, although I was first diagnosed with Crohns, then 3 years ago I was diagnosed with Chronic Colitis.

I always just thought Colitis was pretty much just Crohns except limited to the colon.
07-05-2014, 03:06 PM   #300
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JMC

Perhaps a target date by which they need to raise the £80,000 to complete the MAP test ( I think it's November this year, but not sure) and a countdown to that date, so that donors can see how close we are.
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