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MAP Vaccine Ready for Human Trials - Could be Used for Crohn's

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.
I see no benefit to putting a deadline.
 
Crohn2357: Turkish translation would be great!

Can you please send me your email address (with a private message or send a message to the Crohn's MAP vacicine facebook site) so I can send you the word version. It is easier to work if you have a word version available ;-)

Thank you very much in advance!
 
I see no benefit to putting a deadline.
Deadlines are useful to get people to take action and provide a sense of urgency. Without a clear time frame, people tend to think "it can wait until tomorrow" and before you know it, years have slipped by and nothing has happened. Which is the story of the development of Crohn's treatments in my experience, decades slip by and virtually nothing changes!

£80,000 by November sounds like a good target to me :)
 
Deadlines are useful to get people to take action and provide a sense of urgency. Without a clear time frame, people tend to think "it can wait until tomorrow" and before you know it, years have slipped by and nothing has happened. Which is the story of the development of Crohn's treatments in my experience, decades slip by and virtually nothing changes!

£80,000 by November sounds like a good target to me :)
This is why I think it's a good idea to do a couple "Moneybombs". It's not really a deadline, just a day where everyone comes together to donate. It gets marketed heavily, passed onto many different crohns forums, other various channels, etc..

Because, like you said, without something like that, it doesn't really feel like your giving much.
 
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.
The immune system is amazingly complicated and that is a childishly narrow view of the two diseases. They're not grouped together like animals in the same genus, they're grouped together because their symptoms are so alike. One of the current theories on UC is it's a true autoimmune disorder based on T-Cell overactivity in the colon while Crohn's research is largely currently focused on immune mediation problems, so it it maybe immune deficiency. Especially given many of the implicated genes are involved in immune signaling needed to detect and effectively combat bacteria. They couldn't be more unlike one another in terms of cause.

Sometimes I really wish I went the whole way and got a PHD in this field, it's so AWESOME.
 
The immune system is amazingly complicated and that is a childishly narrow view of the two diseases. They're not grouped together like animals in the same genus, they're grouped together because their symptoms are so alike. One of the current theories on UC is it's a true autoimmune disorder based on T-Cell overactivity in the colon while Crohn's research is largely currently focused on immune mediation problems, so it it maybe immune deficiency. Especially given many of the implicated genes are involved in immune signaling needed to detect and effectively combat bacteria. They couldn't be more unlike one another in terms of cause.

Sometimes I really wish I went the whole way and got a PHD in this field, it's so AWESOME.
Childishly narrow? Oh ok, thanks for the clarification.
 
Childishly narrow? Oh ok, thanks for the clarification.
Basically symptoms have no relation to cause. Two things with same symptoms can be vastly different. They have different names for a reason :p Otherwise it would all be called Crohn's disease.

Although, there is a large debate with Psoriasis and Crohn's being linked some how. Both often exist in the same families. I doubt any research on MAP has been done with Psoriasis though, its not something people would logically link at first. But something tells me they are linked.
 
Etiology in disease is only important insofar as ways it leads to treatment and research, it's not held in such high regard the way it is in zoology as a means of classification. Just because two diseases are considered similar doesn't mean their etiology is at all alike.
 
Hmm… I was just thinking the same right after I sent my previous reply...
Would it indeed be possible to promote the fund raising so that every person donating e.g. £500 or more will have a free test during the development or right after the test is ready?
Does anybody know if the test will be based on a blood sample or something else? If it's based on blood sample would it be feasible to offer this kind of possibility to the donors?
If this was possible (even if it required travelling to London), they might be able to collect easily £100,000, maybe even to fund the whole project until the final completion…
This is a great idea. I'd give double that, possibly quadruple that right now if I knew I could get the test done.
 
I emailed CCFA on the subject, this was their response.

Thank you for contacting the Crohn’s & Colitis Foundation of America (CCFA) through your recent email regarding MAP. I understand you would like CCFA to consider support for an anti-Map vaccine. Please review the information below and attached.

CCFA is well aware of MAP. We have major research projects studying enormously complex bacteria, viruses, and fungi. This study is known as our Microbiome Initiative. To learn more about this project visit http://www.ccfa.org/science-and-pro...t-research-studies/microbiome-initiative.html

MAP is more frequently recovered from the intestines of patients with Crohn’s disease compared to people with ulcerative colitis and individuals without either disease.

However, several findings have caused many researchers to discount a causative role for MAP in Crohn’s disease. First, MAP cannot be detected in many patients with Crohn’s disease and has been frequently found growing in people without the disease. Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with Crohn’s disease. Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in Crohn’s disease, but would likely be associated with no improvement or worsening of disease caused by MAP. Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with Crohn’s disease because of the underlying immune dysfunction. Clinical trials studying MAP and Crohn’s disease are ongoing.

In summary, Mycobacterium avium paratuberculosis may play a role in the development of Crohn’s disease as one of many different microbes that might act as a trigger for an abnormal inflammatory response in genetically susceptible individuals. But until more convincing scientific proof emerges, it cannot be described as a primary or the sole cause of Crohn’s disease.

Dr. John Herman Taylor of England and any researcher is able to request support by contacting CCFA at: http://www.ccfa.org/science-and-professionals/research/grants-fellowships/

Thank you for reaching out to us! If you have further questions, please email CCFA or call our toll-free number at 1.888.694.8872, Monday through Friday 9am-5pm EST to speak with an information specialist.


I kindly responded with my opinion below.

However, several findings have caused many researchers to discount a causative role for MAP in Crohn’s disease. First, MAP cannot be detected in many patients with Crohn’s disease and has been frequently found growing in people without the disease.


MAP has historically been a difficult mycobacteria to culture. It cannot be seen under a microscope. Only using proper analytical techniques can it be verified. Studies have proved this. In the Journal of Clinical Microbiology, a study was done which determined 92% of Crohns Disease Patients to have MAP, vs 26% of control using PCR.
http://jcm.asm.org/content/41/7/2915.full.pdf

Secondly, just because you are not showing symptoms of IBD, DOES NOT mean you are not infected. The MAP present may not be in an active disease state. H Pylori, for example, is well known to cause asymptomatic state, mild gastritis, stomach ulcers, and stomach cancer. YOU MUST TAKE THIS INTO ACCOUNT. Also, different people have different biochemistries and different genes and react differently to different things. Just because somebody has MAP in their system and is not showing active symptoms of IBD DOES NOT prove that MAP doesn’t cause Crohns.


Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with Crohn’s disease.


So because anti-biotic therapy against MAP doesn’t cure Crohns patients at a rate of 100% means MAP doesn’t cause Crohns? Koch Postulates have already shown that MAP causes Crohns, as well as Relman’s criteria. That is, MAP isolated from a Crohns patient was injected into a healthy animal which subsequently become sick with Johnes Disease.

http://www.ncbi.nlm.nih.gov/pubmed/3803136

People build up resistance to antibiotics. They are not a cure. And MAP is known to be hard to kill and resistant to anti-mycobacterial drugs.

Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in Crohn’s disease, but would likely be associated with no improvement or worsening of disease caused by MAP.


I’m sorry, but you’re wrong. If you were to treat a patient with Mycobacterium leprae (a mycobacteria more closely related to MAP) with a biologic drug, they would NOT get worse. Mycobacterium Tuberculosis is an exception not the norm.

http://www.cdd.com.au/pdf/publicati...eases Piecing the Crohn's Puzzle together.pdf

Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with Crohn’s disease because of the underlying immune dysfunction.


So why is it not as present in Pure Ulcerative Colitis? UC’ers have an immune dysfunction, but the bug is not found nearly as much in them as it is in Crohns patients.

http://www.ncbi.nlm.nih.gov/pubmed/15951529

Clinical trials studying MAP and Crohn’s disease are ongoing.


Yes, and CCFA should be at the forefront of this research! You guys represent us, you are the ones with the voices that can reach people that can make a difference. That difference is right here, this is it!
 

kiny

Well-known member
I think it's reasonable to question if MAP is directly involved in the inflammation, or an innocent bystander.

But their argument that anti-TNF would exacerbate the MAP infection is wrong. It doesn't, in fact it does the reverse: http://www.ecco-jccjournal.org/article/S1873-9946%2812%2900017-7/abstract

MAP doesn't divide like TB does, that's why it takes months to get a reading on a culture.

Using immunosupressants to treat an infection is not unheard of, it's often necessary to stop nerve damage or organ failure, it's not as black and white as they think.
 
I think it's reasonable to question if MAP is directly involved in the inflammation, or an innocent bystander.

But their argument that anti-TNF would exacerbate the MAP infection is wrong. It doesn't, in fact it does the reverse: http://www.ecco-jccjournal.org/article/S1873-9946%2812%2900017-7/abstract

MAP doesn't divide like TB does, that's why it takes months to get a reading on a culture.

Using immunosupressants to treat an infection is not unheard of, it's often necessary to stop nerve damage or organ failure, it's not as black and white as they think.
Yep.

Here is some quotes take from an article I posted above.

- M. tuberculosis is a unique pathogen, even among mycobacteria, in that it is adapted to replicate both in the vacuole and cytosol allowing the pathogen to escape from the phagosome to produce disseminated disease.48 To understand the nondissemination of MAP, one must look to the “traditional mycobacterial infection”—leprosy, caused by Mycobacterium leprae, a pathogen that does not disseminate despite known treatment with azathioprine, steroids and TNF-a inhibitors.49
- The intracellular obligatory spheroplast form of MAP is incapable of replicating in the extracellular environment50 and is therefore incapable of disseminated disease.

http://www.cdd.com.au/pdf/publicati...eases Piecing the Crohn's Puzzle together.pdf

^^^See Issue 2
 
Hence the primary issue with MAP detection, it's hellishly hard to not get a false negative because victim cells are less hosts to burst out of and more hotels to live in. I'm curious about the details of their new MAP diagnostic, did they isolate a protein chain similar to tuberculin that only causes a reaction in infected individuals?
 

kiny

Well-known member
Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora
MAP is a mycobacteria, it is not part of the normal gut flora. It's intracellular like all other mycobacteria, T helper and cytotoxic T cells are invovled in mycobacteria infections. Maybe he should tell HIV patients that mycobacteria are part of the gut flora, they can stop taking their antibiotics and drink some yakult probiotics instead. Where do they find these people.
 
I was interested to see that The Crohn's & Colitis Foundation of America (CCFA)irecently passed on a notice for a research study being conducted by RedHill BioPharma that they "thought may be of interest to you." They do go on to say CCFA is providing this information as a service and does not endorse the study or the study sponsor. "

"A Clinical Trial for patients with Moderately to Severely Active Crohn's Disease

RedHill BioPharma would like to alert Crohn's patients about a study:
A potential cause of Crohn's disease (CD) is infection with Mycobacterium avium subsp. paratuberculosis (MAP). RedHill Biopharma is currently enrolling the MAP US study to investigate RHB-104, a new antibiotic treatment for CD. MAP US, a Phase III randomized, double-blind, placebo-controlled, multicenter, parallel group study to assess the efficacy and safety of fixed-dose combination RHB-104 in subjects with moderately to severely active Crohn's disease, will enroll adult patients up to age 75 at sites across the US, Canada, Israel, Australia and New Zealand.

RHB-104 combines clarithromycin, rifabutin, and clofazimine in a novel treatment regimen for CD. remission at week 26 is the primary objective of MAP US; however, as MAP grows slowly, the duration of RHB-104 needed to achieve remission may vary. The Crohn's Disease Activity Index (CDAI) will be used to assess induction and maintenance of remission in patients through week 52. You may be eligible if you:

Are an adult patient up to 75 years old
Have a diagnosis of moderate to severe active Crohn's disease"
 
Has anyone here done much research on psoriasis and crohn's? I know of a few families who have both, but no one person has both diseases at the same time in the family.. only ever an either/or.. which is exactly the case in my family too.

I'm wondering if its also MAP just affecting a different part of the body (regarding psoriasis).
 
I don't know about psoriasis, but below some links to a studies on the link between

MAP and MS:

http://www.ncbi.nlm.nih.gov/pubmed/23439580

MAP and Diabetes 1:

http://www.gutpathogens.com/content/5/1/14

MAP and Blau syndrome (mentions also psoriathic arthritis):

http://www.hindawi.com/journals/ad/2010/127692/

I have seen a study also on MAP and arthritis in the past but cannot find it anymore...

Quite interesting!
If you haven't yet, learn about a concept called colonization resistance as function of the indigenous microbiota, it may be related to all these observations and yet again to reductions in diversity of microbes which may be corrected by a fecal transplant.
 
So, I got my info.
___
Your 3 endoscopic biopsy path blocks.

Two labelled xxx and One labelled xxx

Report:

All tissues are extensively infiltrated with MAP positive cells both in the superficial mucosal layer and in the underlying lamina propria.

Conclusion: Active MAP infection
 
Sab, did you get the test done? That's good news isn't it? (Obviously not that you have the infection) but the fact that you now know what may be causing the issues... Maybe the SSI will allow your body to clear it. Either way, good luck bro, and keep us posted!
 
So, I got my info.
___
Your 3 endoscopic biopsy path blocks.

Two labelled xxx and One labelled xxx

Report:

All tissues are extensively infiltrated with MAP positive cells both in the superficial mucosal layer and in the underlying lamina propria.

Conclusion: Active MAP infection
sir clausin. How did you get this done? Is this from a colonoscopy that they took biopsies from?
 
The case for MAP being the cause of Crohn's continues to strengthen:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064085/

I think it is particularly interesting that Dr Saleh Naser notes:

"It must be emphasized that much of the controversy concerning MAP and CD stems from the inconsistent methodologies that have been used in the detection and isolation of MAP, which have questioned the causal relationship between this bacterium and CD. These observed discrepancies result from the fact that the methods that were designed for the detection of MAP in animals with Johne’s disease are inappropriate for the detection of MAP in humans. Consequently, the need for more sophisticated and optimized methodologies are required so that there can be accurate detection and isolation of MAP in CD patients."

Prof John Hermon-Taylor has developed precisely the test that is needed, it just needs funding to complete it and the clinical trials.
 
Found this which talks about bacteria and Crohns disease and the protein which is key to preventing bacteria from causing problems:

Scientists sleuth out proteins involved in Crohn's disease

http://phys.org/news/2014-07-scientists-sleuth-proteins-involved-crohn.html
Also why has the funding bar on the MAP website been stuck at 15% since the start when people have claimed to have donated? Are they not even updating the website?

People may end up donating when the funding has been met, bit misleading...
 
Also why has the funding bar on the MAP website been stuck at 15% since the start when people have claimed to have donated? Are they not even updating the website?

People may end up donating when the funding has been met, bit misleading...
At the moment, the funding bar needs to be manually updated as there is no easy way to synchronise it with the actual funds coming in. Updates are currently being posted manually on the Facebook page.


There are a number of improvements that need to me made to the website and giving easier access to donation through JustGiving and Paypal and providing a live update (or as close as possible) to current funding status is on the list. I can assure you it is not intended to be misleading, just a work in progress. :)
 
Its easy to update a simple .css file to have:

#divID{
width: 25%;
}
Its like a three second job with ftp... it doesn't really require automated php/html5 as thats a lot of code for something so minor.. a simply edit of CSS once a day in ftp is enough really.
 
I have not seen any mention of the crohnsmapvaccine website on Crohns & Colitis UK (CCUK) and have sent them several queries as to why that is….this is their answer. Tells you a lot about them doesnt it.


"With regard to your request to add a link from our website to www.crohnsmapvaccine.com, I can confirm that the Trustees of Crohn's and Colitis UK have made the decision that we will only add links from our own website to registered charities whose work has a direct relevance to people with IBD. As this is not the case for the website you have suggested, I'm afraid we are unable to help with your request."

Why is it that the mainstream media is so reluctant to write about MAP?
 
Save that response by them, and when they're shown to be wrong take appropriate action for the prolonged struggle that made a lot of people endure for what ever reason.
 
I wonder what the organisation of the Crohn's Map Vaccine group is? Are they a limited company, a charitable trust?

If they were to register as a charitable organisation people might be able to use gift aid to make donations. It also might encourage people to donate if they could see that it has the oversight and structure of a charity.

Has anyone contacted Larry Smarr about the vaccine and MAP test?
 
I'm sure it would be best coming from the medical team involved, if possible. In his video he showed particular interest in the bacteria hypothesis. It'd be good for the whole enterprise to have some big, rich, media savvy backers! (not saying he's all of these!)
 
I wonder what the organisation of the Crohn's Map Vaccine group is? Are they a limited company, a charitable trust?
It is a group of volunteers (mostly Crohns patients and their family) raising funds to complete the research at Kings College London which has charitable status. The intellectual property is held by HAV Vaccines Ltd which will be responsible for manufacturing the vaccine once the trials have been completed. The latter is currently seeking investors.
 
Sorry, I get that. I wondered what entity is receiving the money? What oversight is there etc. I'm sure everything is above board but I'm wondering if people might worry about giving money to something that isn't a registered charity. Charities have all kinds of rules about oversight etc and Gift Aid can make 10.00 from a uk tax payer turn into 20% more.
Kings College London is the charity and receives the money. Why do you think money is going to something that isn't a registered charity?
 
It wasn't immediately clear on the website. I'm reeling that so little has been raised so far! It's a pity that it can't get in the papers somehow. Some kind of human interest story about one of us who's -insert interesting, tough time- and backs the campaign.
 
I'm reeling that so little has been raised so far! It's a pity that it can't get in the papers somehow. Some kind of human interest story about one of us who's -insert interesting, tough time- and backs the campaign.
The actual figure raised is much higher than the number shown on the JustGiving page as this does not show amounts that have come in via other routes e.g. cheques, direct bank transfers, etc. I agree the donation via the JustGiving page, at the moment is surprisingly low, but I expect that to improve in the next few weeks. Below is the last total published which accounts for all money.

 
Well that's all good.

So why won't the charity link to a page raising money for a registered charity?

And, more importantly, are they supporting the effort? If not, why not? What do their supporters think?

In my naïveté, it sounds like a reasonable attempt to -cure- Crohn's which needs support. It sounds -exactly- like the sort of thing that people who donate would want. Their website says they are committed to finding a cure.
 
So why won't the charity link to a page raising money for a registered charity?
I assume you mean CCUK? We can only speculate, but I would guess because they either do not understand the work being done or do not consider it in their interests to promote it.

And, more importantly, are they supporting the effort? If not, why not?
They are not currently supporting the effort. I don't know why.

What do their supporters think?
I don't know

In my naïveté, it sounds like a reasonable attempt to -cure- Crohn's which needs support. It sounds -exactly- like the sort of thing that people who donate would want. Their website says they are committed to finding a cure.
And what would happen to charities like CCUK if Crohn's was cured?
 
Who is the Larry Smarr fellow?

If crohns was cured, everyone at CCUK would need another job…..gastroenterologists would need to tighten their purse strings and billions of dollars would be taken from the pharmaceuticals. Curing crohns would be a disaster!
 
There's a story about MAP in bathroom showers in the telegraph yesterday. A link was posted in there forum here today.

Is it worth someone in the MAP vaccine team want to contact the journalist and make them aware of the vaccine being developed? Perhaps they might do a follow up story, or something
 
There's a story about MAP in bathroom showers in the telegraph yesterday. A link was posted in there forum here today.

Is it worth someone in the MAP vaccine team want to contact the journalist and make them aware of the vaccine being developed? Perhaps they might do a follow up story, or something
Note, this story was published on the Crohn's Map Vaccine FaceBook page last week before the Telegraph article and one of the authors is Prof John Hermon-Taylor. :)
 
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?
Hi, I've been wondering this myself.
I found this study that (I think - please correct me if I'm wrong) suggests that UHT milk *may* not be safe:
(sorry, blocked from posting link to study as I'm too new. Google this to find it:
Rapid Assessment of the Viability of Mycobacterium avium subsp. paratuberculosis Cells after Heat Treatment, Using an Optimized Phage Amplification Assay)

"Incomplete inactivation was recorded for all four strains of M. avium subsp. paratuberculosis under all three time-temperature conditions studied."
Though they do say clearly:
"It must be emphasized that the experiments reported here were not designed to determine the ability of commercial HTST milk pasteurization to inactivate M. avium subsp. paratuberculosis. For many reasons, continuous-flow HTST pasteurization as applied to commercial products cannot be simulated adequately under laboratory conditions, and direct comparison to the real situation may not be possible considering the fact that the wild strains may be less or more heat tolerant than field isolates or type strains used in the laboratory. Rather, the objective of this research was to validate the optimized phage amplification assay and its use for the rapid detection and enumeration of viable M. avium subsp. paratuberculosis cells after heat treatment. Our results clearly demonstrate that the method could be employed in place of conventional culture to speed up the acquisition of results during inactivation experiments involving spiked milk samples. "

Sounds like they should be able to use this technique to assess actual samples from the supermarket, which would obviously be very interesting.

I live in Australia, and have started restricting our family to dairy sourced from QLD, as Johne's disease is endemic in the southern states, especially Victoria and Tas. Western Australia and the Northern Territory are supposedly completely free of Johne's disease... this is one thing that makes me question the MAP hypothesis - I don't think they have lower rates of crohn's in those states (though I've never managed to find data - any idea how I could?).
 
There are a number of research papers you will find here, under advanced reading. Remember exposure to MAP is not enough, there are other factors including genetic susceptibility, so it is not as simple as to say that certain areas of the country do not have Johne's disease, yet still have Crohn's. Also MAP is everywhere, in water, on plants, in meat, in diary products, so there is no one, simple infection route.
 
In the UK, UHT is a different, higher temperature, treatment which turns the milk into long-life.

As I mentioned somewhere else, I'm also using a bacterial level water filter.

I avoid the various dodgy ingredients that have been mentioned on here and I'm also extra careful about hygiene. I wonder whether a tummy bug to most people can result in a flare for me.
 
I spoke with Dr. Chamberlin (Doctor in the USA willing to prescribe anti-MAP therapy)...he mentioned the bug is remarkably difficult to remove (almost impossible to eradicate completely).

When I mentioned that I have had tremendous success on the SCD diet, he seemed unsurprised, saying that there is the possibility that the lack of complex carbohydrates may alter the bacteria's ability to produce energy in some way.

Has anyone spoken DIRECTLY with the Dr.? Also, sorry for the dumb quesiton, but is there any DIRECT evidence that this has been used in humans / worked?

Thanks guys! We're getting there. We're gonna get to a cure soon.
Alex
 
Definitely understand the financial requirement. I am just curious why he's collecting all this cash without even having tried it on, say, 10 willing patients. Hell, I'd do it fo free and pay for my own vaccine...
 
In any case: making a $100 dollar donation. Want this to happen. He also talks about "investment," not donations, for the actual human trial, which leads me to believe those contributing funds will earn some upside when the vaccine goes public (if it works).
 
Would be nice if people were allowed to test those willing to take the risks but unfortunately there's too many legality and "ethical" issues. It's really frustrating actually.
 

Lady Organic

Moderator
Staff member
The case for MAP being the cause of Crohn's continues to strengthen:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064085/

I think it is particularly interesting that Dr Saleh Naser notes:

"It must be emphasized that much of the controversy concerning MAP and CD stems from the inconsistent methodologies that have been used in the detection and isolation of MAP, which have questioned the causal relationship between this bacterium and CD. These observed discrepancies result from the fact that the methods that were designed for the detection of MAP in animals with Johne’s disease are inappropriate for the detection of MAP in humans. Consequently, the need for more sophisticated and optimized methodologies are required so that there can be accurate detection and isolation of MAP in CD patients.
Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?

Lets take C-difficile another bacterium which I also just read about which seems to be more common (or more active) in IBD patient than in the rest of the population. We think C-difficile does not cause IBD, but is rather often ''associated'' or in other words more present in IBD patients.
From my readings, C-difficile can even mimick symptoms of CD including inflamed thickening, blood and pus in the colon. One other risk factors and trigger of C-difficile and for the infection to become symptomatic is using antibiotics... Antibiotics destroy the healthy gut bacteria and without healthy bacteria, C-difficile grows out of control into overt chronic disease, all of wich of course can be concomittant with active CD or more at risk of happening if ill with CD.

About Johne's in cows... In meat and cattle/bovine industry in North America, antibiotics are used A LOT in order to force the bovine to eat more corn and food which are not suitable to their stomachs... Could this abusive use of antibiotics in cows destroy their gut flora, thus impairing their immune defence mechanism to fight MAP or C-difficile? The impaired gut flora and defence could therefore make the bovine not strong enough to living normally with MAP as a asymptomatic carrier or to properly fighting it and which then finally results in overt Johne's disease???

Johne's would develop in the ileum (only?). I didnt read about ulcers, about blood or mucus, about joint, eye or skin issues, about disease in the stomach, colon or any other part of the digestive system of the cow which are on the contrary present in most CD patients... It is a minority of CD patients who only have a problem in the ileum without colon, joint, eye, skin, fistulas, or whatever else issue... Many CD patients dont even have a problem in the ileum which was my case in my first years. How is Johne's disease thought to be so similar to CD to think MAP causing Johne's = MAP causing crohns? I'd like to understand better this theory.

When I read about Johne's (ileum), I think more of a disease like C-difficile (colon): an infection bacterium which targets one organ specifically rather than crohn's which is systemic (full body). I think of the link between antibiotics mega-use in cows and MAP overgrowth resulting in digestive illness and antibiotics and C-difficile overgrowth in humans resulting in digestive illness too. CD is everywhere from mouth to anus, not only in the ileum...Frankly I dont understand the relationship between Johne's and CD. Please help, i'd like to understand better this theory in easy terminology if possible.

sorry for this long post!!!
 
Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?
http://jcm.asm.org/content/41/7/2915.full.pdf

Here is a study using proper PCR methods that detected the mycobacterium in 92% of Crohns patients vs 26% of control.


Johne's would develop in the ileum (only?). I didnt read about ulcers, about blood or mucus, about joint, eye or skin issues, about disease in the stomach, colon or any other part of the digestive system of the cow which are on the contrary present in most CD patients... It is a minority of CD patients who only have a problem in the ileum without colon, joint, eye, skin, fistulas, or whatever else issue... Many CD patients dont even have a problem in the ileum which was my case in my first years. How is Johne's disease thought to be so similar to CD to think MAP causing Johne's = MAP causing crohns? I'd like to understand better this theory.
Skin issues are prevalent. There's pictures where the Cows lose the color of their hyde. Also, we are completely different animals to cows, just as we are completely different animals to mice. The disease may effect one animal differently than another, and vice versa.
 
Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?
I took it to mean that existing studies showed that MAP had played a role in 30-50% of Crohn's cases. Dr Naser emphasises that previous testing methods were not completely reliable so it will be interesting to see the outcome of the Redhill Biopharma (RHB-104) study where they have a better test. When methods that are accurate for detecting human MAP are used I believe the figure is between 90 and 100%.

MAP was proven to be causative by meeting Koch's postulates. Basically, MAP was cultured from the lymph nodes of a human patient who had Crohn's then used to infect a goat who developed Crohn's like symptoms and was found to have MAP in its gut. If you get infected with MAP it will cause further immune dysregulation leading to leaky gut and other bacterial infections.
 
That's what's frustrating, is that people in the medical industry ignore koch's postulates, it's fking ridiculous haha, they just ignore it as if it doesn't exist. I posted an open letter written by various physicians a while ago, they talk about their own journey and success of going on anti-map medication, granted it was a small number, they were all 100% better, to me it's obvious that map IS without a doubt at least ONE cause of ibd.
 
It's because they're not researchers and it's not their place to comment on things that aren't anywhere near approval by the FDA or any other organization that handles medicine. If they open their mouths and someone gets hurt they can get bit in the ass.
 
That's got nothing to do with acknowledging scientific proof, which is what koch's postulates is, the scientific criteria required in prooving causation. And seriously, don't get me started on what a load of bollocks the FDA is, they're criminals backed by richer criminals, (and I'm making reference to countless people that have died of cancers or kids with epilepsy that could have been avoided had the FDA had really cared or looked at the evidence that was so plain to see with benefits of extracted marijuana oil...) FDA are in bed with big pharma and have been for decades. They are far more interested in money than your wellbeing.
 
If they even acknowledge it it could be taken as endorsement. It's easy for us to bray about these things but their livelihoods are on the line whenever they open their mouth on anything vaguely related to medicine.
 
Sorry, I could agree with you but then I feel like we'd both be wrong, the only livelihoods on the line are those who are really sick and can't get what they need, it's been this way for a long time. I'm not saying they go and legalise anything with anecdotal success stories, obviously they have to cover their ass, but things that have already had studies done and shown to be effective and ALOT safer than what pharmaceuticals are currently available... Go and watch Dallas buyer's club if you can be bothered, that's a prime example of what's still going on... It's fking sad really, It's morally disgusting.
 
Sorry, I could agree with you but then I feel like we'd both be wrong, the only livelihoods on the line are those who are really sick and can't get what they need, it's been this way for a long time. I'm not saying they go and legalise anything with anecdotal success stories, obviously they have to cover their ass, but things that have already had studies done and shown to be effective and ALOT safer than what pharmaceuticals are currently available... Go and watch Dallas buyer's club if you can be bothered, that's a prime example of what's still going on... It's fking sad really, It's morally disgusting.
I'm with you. They are all morally bankrupt. They have their eyes on one thing. MONEY. That's all the United States is about.
 
I'm glad you understand the souls of us medical researchers so well. :)

It's not like we have loved ones who get sick too.
 
Nobody said you didn't, what you're trying to argue is that the FDA put their "livelihoods" on the line and what I'm saying is tell that to the ghosts of people who have died when the FDA conviscated medication that was keeping them alive because there hadn't been "trials" on it. I have a scientific mind I understand the importance of testing things but take marijuana for example, do you have any idea how long people have known that it can cure cancer for? Big pharma tried and are still trying their damnedest to restrict it's availability, and they did it largely through it not being passed by the FDA. Now on to the relevance of this thread, if you're a medical researcher you'll be aware of koch's postulates, I don't come on these forums to argue but when something's met the scientific criteria to prove "proof of causation" the case is closed. They can't deny it anymore, it's like saying the earth is flat.
 
With regard to the above posts - I am a businessman, and totally agree - these companies are in it for the profits. If Crohn's and other autoimmune diseases get cured, Abbvie (maker of Humira) becomes completely bankrupt (over 50% of their profits are derived from this one medication).

In my personal opinion, you won't see these companies (the large ones with the resources) delve into alternative therapies or support new ones until the patents on their existing drugs run out and generic manufacturers can make duplicates for cheap (metrandolzione (SP?) vs. Flagyl, substitute vs. vicoden)

With all that being said, the power, once again, must be derived from the people. The only way to beat this is to start demanding alternative cures through crowd source funding - unfortunately, those suffering must support the efforts of the people who really want to help (Professor Taylor). What I am saying is...let's stop focusing on the bad, and start focusing on the good, and figure out a plan on how we are going to accomplish the funding for this study and vaccine. I'm willing, open, and will help in any way....can we organize a nationwide fundraiser (and make sure not a cent of it goes to the CCFA who's backed by big pharma?). Can we push our family members to make small 25 - 50 dollar donations?
 
Johnson & Johnson makes Remicade (second most profitable drug in the world) and they are investing in microbiome biotechs.
I don't see microbiome biotechs providing a cure for Crohn's before the patents on Remicade run out next year. The original patent was due to expire this year, but they got an extension.

"Remicade, the autoimmune disease blockbuster, generated more than USD 7bn in worldwide revenue in 2012." And people wonder why there are obstacles to raising $5M to prove a vaccine that could cure Crohn's?
 

Lady Organic

Moderator
Staff member
http://jcm.asm.org/content/41/7/2915.full.pdf

Here is a study using proper PCR methods that detected the mycobacterium in 92% of Crohns patients vs 26% of control.



Skin issues are prevalent. There's pictures where the Cows lose the color of their hyde. Also, we are completely different animals to cows, just as we are completely different animals to mice. The disease may effect one animal differently than another, and vice versa.
Hi Thank You I have read the article. In the control group witn Non-IBD, 9 patients tested positive for MAP, all of them had some colonic, digestive issues such as IBS, colon cancer or simply diarrhea, etc. How does the Koch postulate is sure digestive disease in these goats is more of a crohns than an IBS or orther digestive conditions? Were ulcers seen, granulomas?

I am still not convinced that the disease other animals develop wether in their natural environnement or in the case of Koch's postulate is the same as CD. Just in humans, UC is so similar to CD (I have UC-like crohn's), yet they are not the same and eventhough they respond to the same drugs, they respond differently to Enteral diets, GI Dr John Hunter LOFFLEX diet and Dr Jean Seignalet hypotoxic diet.

It would be interesting to measure the MAP activity of a patient when his CD is active and measure it AFTER he goes into NATURAL remission without a medication such as immuno-supressant. has this been done? Some people DO go into remission periods without any treatment or lifestyle change.

It is known that the gut is populated with higher amount of bad bacteria when the disease is active and that it comes back to a normal level when the disease enters remission. This is the case with other chronic inflammatory diseases such as RA for instance. On the MAP website, it is mentionned immuno-supressant help make slow down MAP proliferation. But, what about all those patients who go into natural remission without immuno-supressants and who continue to eat meat and drink dairies and contaminated map water? They prolly too come back to bacteria normal levels without medical intervention when in remission...

To me, it is still not clear that MAP is causative. I still feel MAP is associated with CD and happens to be there and take advantage of a already weak host to proliferate, just like c-difficile would do. I think, the gut flora is already disrupted since a long time in humans and in animals in the western world, and then MAP or other bacteria have wide open door to invade and proliferate potentially causing more or different damages (super-infection?). some predisposed individual, who eat bad food such as most animals here (who predominantly eat GMO corn and soy), and us too who eat too much food which does not protect our gut flora (only vegetables, fruits and fiber are protective and they are extremly lacking in western diet), combined with the high amount of antibacterial agents used for prevention in animal industry and us eating that meat and milk and water FILLED with antibacteria, inevitabily disrupt gut flora, gut permeability and then most of us go on to develop chronic illnesses of all kinds at some point in life. Most cancers are also in the same bag of chronic conditions which develops over decades. Without proper protection and overuse of antibiotics in meat and possibly water, our colon gets weak in the western world with all sorts of colon diseases, thus we are more at risk of being targetted as hosts for bugs. Therfore I still think MAP is associated rather than causative, unless I read more convincing evidence of course. I definately encourage this research and trial, anything that is not detrimental to our body, like we are used to, I encourage greatly and I am thinking of donating. I have no doubt anti-Map vaccine can help as a treatment, as regular antibiotics help too in reducing symptoms of CD and putting some cases in remission, but to cure? In the long term? I have read in the thread or in the MAP website that the vaccine has been tested on humans with CD and it worked for some cases who tolerated it... Am I correct? Could I have the link please? For how long was the remission maintained after treatment? so many questions..., but interesting.

I think it is important to remain open to all possibilities when searching for an answer. being close minded prevents people for experimenting and exploring and getting closer to a solution. It is clear many people and researchers in the FDA have hidden agendas and it is true pharmaceuticals and pesticides and GMO Magnas sleep with the gvmt. Those companies are extremly rich and they finance extensively those parties $$$ in different legal or illegal ways. In return, the political leaders have no other choice but to push the machiavelic plans and stop any controversial issues raised by other independant researchers in search for morality and safety that contredicts the products of their contributors. Most researchers who studied the effect of GMO for instance have lost their job or subventions in university settings. University researchers lose their job if they start to discover things that are not pleasing to the eye of the MAFIA. Thats not what I call research. thats what I call a CRIME, CORRUPTION. The first quality a researcher should have or any scientitist should have is CURIOSITY and desire for exploration and thats what should be encouraged. Outcast with strong ideology and character with new ideas or proposition are often being severly rejected by the core, the order, the syndicate. The human being is the same since its creation... :( That rejection and shut up process is not scientific, it's ANTI-SCIENTIFIC!!! Rejecting ideas and findings without explorating it reasonably is primitive and not part of the true scientific mind.

two years ago, on a trip in India, Hillary Clinton was not happy and warned Indian agricultural and health Minister about ruining the chances of better economy in India after he decided to suspend the plantation of ''GMO-Round up-ready Monsanto eggplants'' due to solid doubts of carcinogenic effects of GMO and pesticides raised by Dr Seralini in a 2 year study on rats... Seralini has been violently criticized, his article has been retracted-taken off in the scientific journal it was first published in. But after a consortium of more than 300 scientists world wide who signed a petition, another journal finally decided to publish the study again very recently.
 
It would be interesting to measure the MAP activity of a patient when his CD is active and measure it AFTER he goes into NATURAL remission without a medication such as immuno-supressant. has this been done?
It hasn't been done because until very recently it was very hard to accurately test for MAP.

I think it is important to remain open to all possibilities when searching for an answer. being close minded prevents people for experimenting and exploring and getting closer to a solution.
I completely agree. If you believe the MAP theory is wrong, you should still support further research so that we can prove conclusively it is wrong. If MAP is not the cause, it significantly narrows the field of research for a cure for Crohn's. The only way we lose, is if the research is not done.
 
Hello all, new to the forum and to the disease as my son was just recently diagnosed. I have been looking into all the possible treatments and am intrigued by the vaccine idea. I am not quite clear though about the MAP test, or lack of a test. Dr. Harmon-Taylor needs money to commercialize his test? Isn't Redhill also developing a test? Does anyone here know if these tests are the same? I have also seen the name of Dr. Nasser in Florida who has also developed a test ( or not ). And where does he fit in with the MAP theory? Sorry if I seem a bit dense, but I have read so much about Crohn's for the last two weeks and everything is beginning to blur. Hopefully some patient person can set me straight. Thanks!
 
With all that being said, the power, once again, must be derived from the people. The only way to beat this is to start demanding alternative cures through crowd source funding - unfortunately, those suffering must support the efforts of the people who really want to help (Professor Taylor). What I am saying is...let's stop focusing on the bad, and start focusing on the good, and figure out a plan on how we are going to accomplish the funding for this study and vaccine. I'm willing, open, and will help in any way....can we organize a nationwide fundraiser (and make sure not a cent of it goes to the CCFA who's backed by big pharma?). Can we push our family members to make small 25 - 50 dollar donations?
YES WE CAN! I have raised €6,500 (8,750 USD) for this vaccine in two months! From relatives, friends, colleagues, friends of friends, parents of colleagues, you name it. We are 7 individual fundraisers at the moment, "Crohn's MAP Vaccine heroes", but we would need MORE people to get activated and donate and ask their loved ones to donate too, for themselves!
 
Hello all, new to the forum and to the disease as my son was just recently diagnosed. I have been looking into all the possible treatments and am intrigued by the vaccine idea. I am not quite clear though about the MAP test, or lack of a test. Dr. Harmon-Taylor needs money to commercialize his test? Isn't Redhill also developing a test? Does anyone here know if these tests are the same? I have also seen the name of Dr. Nasser in Florida who has also developed a test ( or not ). And where does he fit in with the MAP theory? Sorry if I seem a bit dense, but I have read so much about Crohn's for the last two weeks and everything is beginning to blur. Hopefully some patient person can set me straight. Thanks!
very understandable Mummy bear.
good for you for looking into it…
There is no 'map bacteria test' currently…well, there isnt one that is available to the masses, but dr hermon taylor and others have the ability to test for it in resected gut tissues….(gut that has been operated on)….You are right, Redhill have a human trial for anti biotics that are targetting at the MAP bacteria and that is happening right now, with Dr Naser in the USA.

So there is Dr Hermon Tylor and Dr Naser working on a clinical diagnostic test that will enable patients to be tested for having a MAP bacteria infection, until now, this has been unavailable die to the difficult nature of the bacteria.

Dr Naser, Dr Borody and others are younger than Dr Hermon-Taylor…it is Dr Hermon-Taylor who is the 'elder' and the younger doctors are following his and Dr Crohn's lead.

Hope that helps….

Good luck with your son - getting the inflammation under control is paramount….
 
And Professor Hermon-Taylor is the one currently working on a vaccine for Crohn's which can be used to treat infection as well as preventing it - hence the current appal for funding:

www.crohnsmapvaccine.com

Extensive tests in mice and cattle have shown the vaccine to be powerful and safe.

Please read the FAQ's page for more info.
 
I just donated. I also understand the cynicism about big pharma, but I also have faith that a couple of smart scientist and/or investors will get involved not simply because it is morally the right thing to do, or because they are personally involved in some way with this horrible disease, but they are going to realize that a "cure" will also bring them wealth. There are small start ups working on a pill form of good poop ... and others will do the same for other treatments. But a lot of times of course, there just isn't enough money. I am including a link to a TED talk that discusses funding of new treatments, with the hope that it might prove useful. www.ted.com/talks/roger_stein_a_bold_new_way_to_fund_drug_research#t-657496
 
I wish they could figure out a way for U.S. donors to get a tax break. Maybe that is in the works. (Our family made a rather large donation regardless.)
 
there must be a way to get a tax break if you are in the US and donate to a charity in the UK???? Surely????

maybe there is a tax expert on this forum? Might be worth asking……?

thank you for helping.
i do hope it is the cure~!
 
not sure they donate to countries like England, i think they are more interested in helping third world countries? Their website is very very good, you can see all the information there as to who they might support. I remember looking at it and reached a dead end.
 
Yes, I was wondering about the same thing. I am also thinking about places like Kaiser , ie HMO 's. I should think they would have a financial incentive to find a true remedy. I have never, ever tried to raise money and I do not want to make a mistake and blow any chances, but I am willing to approach these organizations or help someone who perhaps has more experience.
 
Just thought I would add this info from Korea.
Johne's first discovered in herds 1967.
Look at the low but rising IBD incidence rates from 1986 on, cant find
older data. MAP can have long incubation period, but you don't need an actual
infection, the MAP antigen is everywhere.
Faroe Islands have the highest incidence rate of IBD in the world, I wonder
why. Too bad cannot find, Johne's disease statistics for Faroe Islands.
But it was/is a colony of Denmark, Denmark high in IBD and Johne's.
Old Mike
http://www.ncbi.nlm.nih.gov/pubmed/22749233

http://www.ncbi.nlm.nih.gov/pubmed/17941073

www.ncbi.nlm.nih.gov/pmc/articles/PMC2871616/#!po=1.92308
 
I am looking into setting up a non-profit in the US for tax purposes for folks living here who donate to the vaccine, unless someone has either already done it, or is in the process
( which I would appreciate knowing about, so please let me know)

I think even if this vaccine does not work, if everyone who has Crohn's or knows someone who suffers from it, donated simply a dollar or two ( or pound or euro )we could then move this thing forward and know for sure. For the doubters, they could say, "see I told you so" and if it did work we could all celebrate. I do not understand the resistance, particularly if there is even a hair thin possibility that it might work. What is one dollar, or pound or euro ? Alone, nothing, but amassed maybe permanent remission.
 
I so agree Mommabear. We need to put this to bed and find out once and for all if this is the treatment we have all been waiting for. A few pounds/ dollars/ euros from those affected or relatives/ friends/ colleagues of those affected would see us well on the way. If it proves to be the success it is expected to be, surely we all need it to be available as soon as is humanly possible.

www.crohnsmapvaccine.com
 
I am looking into setting up a non-profit in the US for tax purposes for folks living here who donate to the vaccine, unless someone has either already done it, or is in the process
( which I would appreciate knowing about, so please let me know)
I believe this has been sorted out, so you don't need to do it.
 
My son was diagnosed the end of June and he already has a fistula! He will be seeing the surgeon tomorrow. We were hoping he would be able to participate in the Redhill Anti-Map trial, but the damn fistula ruined that idea ... at least for now.

The number of doctors who are participating in the trial is significant and so far it is limited to the USA and Canada. They are going to open it up to Europe soon. I am assuming these doctors also believe in the MAP theory ... I think more people believe this theory than it appears.

Just an observation.
 
1.) Can someone provide a link where tax deductible donations can be made in the US?

2.) I am worried that this vaccine will be bought by big pharma and then will disappear -> they'll claim it doesn't work, and then will shelve it to keep profiting off of Humira and other biologics.
 
Dr. Hermon-Taylor's vaccine is already owned by a pharmaceutical company. I would like to be positive and think that this will actually get to trials, prove its efficacy, and hopefully come to market.

From http://crohnsmapvaccine.com/vaccine/: "The intellectual property of the Vaccine is owned by the company HAV Vaccines Ltd., who are seeking investments totaling this amount to fund manufacture and trial of the Vaccine."

Maybe what folks who have correspondence rapport with professor Hermon-Tayloer can get a clarification on what role HAV will play in the trial and since I would figure HAV is a commercial enterprise, what separates the non-profit aspect of the trial from HAV's interests.
 
It's very difficult to find the Just Giving page. When i type in something like map vaccine donation.... It does not pop up. I just found it through a link on this thread. I think that's why very few people donate. For whatever reason you can't google it or find the donation site.
 
The easiest way to find the Just Giving page is to access it via the Crohns Map Vaccine site:
Www.crohnsmapvaccine.com

If you scroll down to the bottom of the home page and click on 'donate now' you will see the link to Just Giving.

Hope this helps.
 
I hate to say this, but HAV Vaccines will MOST definitely be looking to sell the rights to a large pharmaceutical company. If you look for HAV vaccines online, there is no website....the company is likely a private holding company made up of an individual group of investors who have invested their own capital and will be looking to profit from a sale after a phase 1 trial proves successful (similar to other small biotech development companies that develop and sell.)

The important thing here is to ensure that we keep this I'm the light. Follow the trial. Ask questions. Make donations, but demand that you are kept in the loop to prevent this from disappearing. The transparency must come from advocates of the disease who follow this process like hawks.
 
It looks like people are being asked to fund the test not the vaccine? It's a pity it couldn't have been set up as a charitable, cooperative trust etc. We could have all become shareholders ourselves then.
 
I believe there is still the opportunity to be a stakeholder in the whole thing…and from what I can tell about Dr Hermon-Taylor, he will do whatever he can to make sure his lifes work results in the cure for crohns for ALL OF US. That is his mission. He is 77, i am sure money is not that important to him right now, aside from getting the funding to fulfill his passion….to prove MAP is the cause and the t-cell vaccine the cure.
 
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