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

Crohn's Disease Forum

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Helenv said:
It is really amazing the support that you get, all you need to do is set up a just giving page, connect to the Crohns MAP heroes and start to spread the word.
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I agree, I have raised almost £7,000 in three months for the vaccine, donations mainly coming from friends, colleagues, relatives and totally strangers. All you need is to try!
 
electrichead said:
To the people who think large drugs companies are going to try to ban this vaccine - you can't think that way about all of these cures/vaccines that exist. Drug companies will profit from such vaccines by manufacturing/distributing them. Think about it - there are loads of vaccines available for a variety of diseases that could otherwise be 'treated' temporarily.
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Actually, I have friends working in the vaccines area and they find it very hard to get funding. Indeed, large pharma don't "ban" vaccines, but they don't go out of their way looking for them. As to the ethics of Pharma, one need only recall the use licences granted for azt when AIDS started up. I could name many a case where pharma was happy to do questionable things to make profits. But that would be off point.

As to a MAP vacc - I'd be happy to give it a bash
 
it is fair to think that a drug company would try and suppress the crohns map vaccine if it can cure the disease. Simply because with infliximab/humira they are making BILLIONS every year, whereas with the vaccine they would only make money for one dose and then never make any money from crohns ever again.

If you had a product that made you billion of dollars every year and a new product came out that was going to make you obsolete, what would you do?

Buy the rights to the new product?

Keep the sceptical goggles on people.
 
Hi Everyone
I have been following the progress of the MAP test and vaccine with interest and believe we could be on the brink of something special. However, I am trying to get my head around the timescale for all this. The Crohn's MAP Vaccine site says that they need to raise £70k by November this year and a further £300k to trial the MAP test in the clinic, all of which they are hoping to raise from charitable donations. So far they have raised £39,000 or so, just over half of the £70k November target, which is a tremendous effort. Does anyone know what the timescale is to raise the remaining £300k?
They also need to get the vaccine manufactured and into clinical trials which will cost a further £2.65m. The intellectual property for the vaccine is owned by HAV Vaccines Ltd and this company will be seeking investments for this amount for the manufacture and trial of the vaccine.
Does anyone know if this is happening concurrently and, if so, if any/what progress has been made? Does anyone know when the MAP test might be available to the public? Does anyone know how long the vaccine will take to manufacture and trial and then be available to the public? I have looked on the Crohn's MAP vaccine site but am getting a tad confused. There seem to be people on here who have information about all this and so might have answers to some of the questions. Many thanks.
 
As someone who has had a fecal transplant and done well with it, there certainly is use for them in some patients as a treatment modality. But a cure? I have a bridge over the East river to sell you.

Best case scenario with FMT besides the resolution of dysbiosis, control of bad bugs, replacement of good bugs, would be a reset of the immune system. IOW, the new fecal matter causes a cessation or rebooting of the immune system response in the GI system. That has not and will be difficult to prove. However, even if that does occur intuition screams it would only be temporary. FMT cannot correct the host defect all us IBDers have. So please don't use terms like cure. It implies a problem completely gone never to return, and so far it is not the case save for a very small percentage of recipients.

So, though I am very happy FMT patient, let's keep the hyperbole to a minimum.

As for MAP, their may be something to the theory and it certainly needs thorough research, but JHT has been in neutral for over 2 decades, always asking for money, always "a year away" from something. But ask yourselves what tangible accomplishment has he obtained to move the pendulum in any meaningful direction in the past 10 years? 15 years?
 
Thank you for your input baistuff. :)

Previous posts have been deleted. Let's keep this thread on topic about the MAP vaccine. Thank you everyone for your cooperation. :)
 
baistuff said:
As someone who has had a fecal transplant and done well with it, there certainly is use for them in some patients as a treatment modality. But a cure? I have a bridge over the East river to sell you.

Best case scenario with FMT besides the resolution of dysbiosis, control of bad bugs, replacement of good bugs, would be a reset of the immune system. IOW, the new fecal matter causes a cessation or rebooting of the immune system response in the GI system. That has not and will be difficult to prove. However, even if that does occur intuition screams it would only be temporary. FMT cannot correct the host defect all us IBDers have. So please don't use terms like cure. It implies a problem completely gone never to return, and so far it is not the case save for a very small percentage of recipients.

So, though I am very happy FMT patient, let's keep the hyperbole to a minimum.

As for MAP, their may be something to the theory and it certainly needs thorough research, but JHT has been in neutral for over 2 decades, always asking for money, always "a year away" from something. But ask yourselves what tangible accomplishment has he obtained to move the pendulum in any meaningful direction in the past 10 years? 15 years?
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I think this has been covered already extensively by JMC. Not sure what the point is of bringing it up again.
 
Poppysocks said:
I think this has been covered already extensively by JMC. Not sure what the point is of bringing it up again.
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Subsequent posts are still talking or encouraging folks to donate. Just trying to get
People to think twice before parting with their money. Many of us spend a ton on meds, supplements, doctors, missed work. It should not fall on the desperate patients to part with money for this work. Just trying to protect some vulnerable folks, that's all. But your message is clear, ill shut up about it.
 
baistuff said:
Subsequent posts are still talking or encouraging folks to donate. Just trying to get
People to think twice before parting with their money. Many of us spend a ton on meds, supplements, doctors, missed work. It should not fall on the desperate patients to part with money for this work. Just trying to protect some vulnerable folks, that's all. But your message is clear, ill shut up about it.
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Plz do, if this vaccine ends up being a cure then you're going to be the person that was trying to convince those who donated to slow down the process. Conversely if it doesn't work then you can rightfully say it's not like you didn't warn us, but either way at least we will know, until then please stop trying to slow down its progress, many of us may be desperate but you have nothing if you don't have hope.

Likewise, this thread is for the purpose of donating and continuing progress for the vaccine and it's test, so you're really out of place hopping on it trying to slow it down. I think anyone who is smart enough to connect the dots and done their research will be smart enough to make their own decision if they want to donate or not, but your continuous bashing of JHT is not on.
 
Mattie said:
Hi Everyone
I have been following the progress of the MAP test and vaccine with interest and believe we could be on the brink of something special. However, I am trying to get my head around the timescale for all this. The Crohn's MAP Vaccine site says that they need to raise £70k by November this year and a further £300k to trial the MAP test in the clinic, all of which they are hoping to raise from charitable donations. So far they have raised £39,000 or so, just over half of the £70k November target, which is a tremendous effort. Does anyone know what the timescale is to raise the remaining £300k?
They also need to get the vaccine manufactured and into clinical trials which will cost a further £2.65m. The intellectual property for the vaccine is owned by HAV Vaccines Ltd and this company will be seeking investments for this amount for the manufacture and trial of the vaccine.
Does anyone know if this is happening concurrently and, if so, if any/what progress has been made? Does anyone know when the MAP test might be available to the public? Does anyone know how long the vaccine will take to manufacture and trial and then be available to the public? I have looked on the Crohn's MAP vaccine site but am getting a tad confused. There seem to be people on here who have information about all this and so might have answers to some of the questions. Many thanks.
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Just bumping this to see if anyone has any answers to the original questions?
 
I have asked them and I am assured that these questions are going to be answered by the crohnsmapvaccine over the coming days.

Please understand, everyone is very busy working towards the cure.
 
I will try to answer these as accurately as possible, but also remember there is a long list of questions that has been sent to Prof Hermon-Taylor and better answers will be put in a newsletter and on the website later.

Mattie said:
The Crohn's MAP Vaccine site says that they need to raise £70k by November this year and a further £300k to trial the MAP test in the clinic, all of which they are hoping to raise from charitable donations. So far they have raised £39,000 or so, just over half of the £70k November target, which is a tremendous effort. Does anyone know what the timescale is to raise the remaining £300k?
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The £70k target is to fund the MAP Test research in 2015. It is enough money to cover the salary of a research scientist (who does flow cytometry, etc.) and the materials and other equipment needed. If the £70k target is hit, the research will proceed as expected and hopefully be completed before the end of 2015. Without this money, the lab technician who does a lot of the work will be unemployed when the money runs out.

I expect the £300k target needs to be met by the end of 2015. The current plan is to apply for a grant from NIH. More details on this when available.

Mattie said:
They also need to get the vaccine manufactured and into clinical trials which will cost a further £2.65m. The intellectual property for the vaccine is owned by HAV Vaccines Ltd and this company will be seeking investments for this amount for the manufacture and trial of the vaccine.
Does anyone know if this is happening concurrently and, if so, if any/what progress has been made? Does anyone know when the MAP test might be available to the public? Does anyone know how long the vaccine will take to manufacture and trial and then be available to the public? I have looked on the Crohn's MAP vaccine site but am getting a tad confused. There seem to be people on here who have information about all this and so might have answers to some of the questions. Many thanks.
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Yes, it is happening concurrently. Yes there are investors who have expressed an interest and I believe the sums which have been committed are sufficient to cover the initial vaccine manufacturing costs. Again however, I need Prof Hermon-Taylor to officially confirm that. We have been waiting on an answer for a few weeks, but hopefully this will happen soon.
 
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http://www.aeii.org/DrTaylor/Tragedy/MilkUKGrant.pdf
"It was concluded that viable M. paratuberculosis is occasionally present at low levels in commercially pasteurized cows’ milk in the United Kingdom."

http://www.aeii.org/DrTaylor/Tragedy/MilkMarshfieldUSA.pdf
"The combined data from the two laboratories revealed the presence of viable MAP in 2.8% of the retail whole milk pints tested."

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2672.2009.04286.x/full
"The presence of MAP in raw and pasteurized milk has been the subject of several studies which show that pasteurized milk is not always MAP-free and that the effectiveness of pasteurization in inactivating MAP depends on the initial concentration of the agent in raw milk. "
 
Can we please stop the conspiracy theory nonsense about people or companies trying to stifle cures? Do any of you know anyone at any drug company? Has any one of them asked you for a dime? Funny, JHT has, but I don't think anyone of them has solicited anything from any individual here. Have any of you attending an R+D meeting, written a grant proposal? conducted a trial?

In the US at least, drug companies have deals so costs can be reduced. Yes, many drugs are VERY expensive. But what you don't realize is that the real bad guys in what comes out of our pockets are INSURANCE payors, not the drug companies. I have dealt with both. Have any of you called the drug comapnies directly about discount on drugs? Do yo know how much free stuff they supply all over the world? Yes, drug companies may a ton of profits. Name me one business that is not out to make a killing? The fight here is with insurance. How is it that one person pays 5 bucks for Uceris, and another 500? It's insurance determined.

Please realize that the drug company that finds a cure for any disease will be set for life. They all want a cure. I don't see anyone whining about QU biologics. They are a drug company as well.

Please do not fill a message board of sick, vulnerable people with conspiracy theory. If you have proof of someone squashing progress, then bring it. Otherwise it does not belong here. MAP is worth investigating and is being investigated- no one is stopping JHT, Nasser or anyone else from anything.

Humira and Remicadee, though expensive and full of side effects, have given many people their lives back- whether from IBD, rheumatoid Arthritis, or countless other conditions.

Maybe the makers of Humira and Remicadee shot Kennedy as well.
 
I sort of have to agree with baistuff on this point.

Can we please stop the conspiracy theory nonsense about people or companies trying to stifle cures
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Drug companies are a for profit business, and answer to their shareholders like any other corporation. They are no different than banks, oil companies, technology companies, etc. etc. etc. for wanting to make money. It's their raison d'être

Though I don't personally believe MAP is behind all cases of CD, I hope that Prof. Hermon-Taylor's vaccine proves out to be effective in at least a portion of the population, and that he, his family, and the investors backing his efforts become filthy rich as a result. Even if it cures only a small subset of CD patients, that might shift thinking enough and open new doors in how others are looking at the disease.

In the meantime, I'm glad Remicade and Humira are available. They do help a lot of people manage this disease pretty well. And there are other big pharmas on their heels bringing more effective treatments to market, which I'm sure will be as shockingly expensive.
 
xeridea said:
Drug companies are a for profit business, and answer to their shareholders like any other corporation. They are no different than banks, oil companies, technology companies, etc. etc. etc. for wanting to make money. It's their raison d'être
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I have no time for vague conspiracies theories and I completely agree it has no place on a forum like this, unless someone has a concrete and specific example.

I do believe however, that capitalism fails to produce optimal results because the incentive to maximise profits is often contradictory to the best health outcome for patients because only sick people need drugs. Anyone who has worked for a large corporation knows that the pursuit of profits often leads to morally questionable decisions being made and it does not require a huge stretch of the imagination to believe that a pharmaceutical company would protect multi-billion dollar revenues by disrupting the trial of a competitor cure.

It is also worth noting that the issues with medical insurance companies that exist in the USA, largely do not occur in Europe because we have effective socialised health care.
 
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baistuff said:
Please realize that the drug company that finds a cure for any disease will be set for life. They all want a cure. I don't see anyone whining about QU biologics. They are a drug company as well.
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That is only true if there is more money to be made from the cure, than drugs which create an on going dependence.
 
JMC said:
That is only true if there is more money to be made from the cure, than drugs which create an on going dependence.
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If a drug company cured crohns or any other condition tomorrow, they would get a nobel prize, have media, universities, and other institutions clamoring for their time, be on the book and lecture circuit, and be given grants and resources for every other condition. The money from that drug, or other drug would be a side point. It like the real elite pro athletes ( derek Jeter, Lebron James, Sidney Crosby)- sure, they make a high salary, but their real money comes from endorsements, commercials etc...

The fortune and fame that would come with a cure is immeasurable. Sure, they make money off the chronic stuff, but it's nothing compared to what a real cure would bring. BTW- it's not only sick people who take meds chronically (Lipitor anyone????? - look at the primary prevention studies and who sponsored them.)

And while it's true that individuals in any big corporation can lose their moral compass organizations that have to answer to shareholders, the government, university partners, and investors have a lot more at stake than rogue lone rangers in that department. A drug company caught lying about something (Vioxx anyone? ) will pay dearly.

Interesting discussion.

I still say here in the US the insurers are the root of all evil. Their goal is NOT that of the patient. I speak to medical directors of insurance companies regularly. I wish I could rip the licenses up.
 
I'm not an expert but as I understand it, as a company you make decisions based on projections of risk, effort required and potential return on investment.

It's not hard to imagine the results of these calculations may make treatments which generate ongoing revenues more attractive than developing a single cure.

Thank goodness for the mavericks of the world, university research and public grants.
 
Karma said:
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It's not hard to imagine the results of these calculations may make treatments which generate ongoing revenues more attractive than developing a single cure.
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This is a somewhat nuanced perspective I have that I submit for your consideration. Executives at corporations probably are more focused on quarter-to-quarter results with an eye on that year's annual results. If we are to look at the stats that say 4 million people worldwide have Crohn's, I could fathom a cure having a market value of somewhere in the $200 billion range. That's just to take care of the current cases. There will likely be a smaller stream of newly diagnosed cases annually to keep the pipeline somewhat filled.

I don't know, most executives sit at the head of a company 5, maybe 7 years? I think they would gladly jump on the chance for a blockbuster blow-out with 100's of billion dollars worth of short term gains on their watch rather than hunker down for the long haul of 2 - 5 billion a year to for a maintenance drug.

Also consider, in the U.S. at least, patents on drugs last only 20 years from when filed. Since most companies file the patent before clinical trials start, the effective profitable life of a drug is usually 8, maybe 10 years.

Ultimately I think the cards are stacked in favor of someone finding a cure for Crohn's. There are a lot of smart people working on the problem, and I think every single one of them will be happy with the rewards, both tangible and intangible, once they do.
 
xeridea said:
I don't know, most executives sit at the head of a company 5, maybe 7 years? I think they would gladly jump on the chance for a blockbuster blow-out with 100's of billion dollars worth of short term gains on their watch rather than hunker down for the long haul of 2 - 5 billion a year to for a maintenance drug.
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Ignoring the fact that I think you are an order of magnitude too high on the commercial benefit of a Crohn's cure, where are the examples of drugs that cure a disease generating huge revenues either in the short or long term?
 
I think we are throwing around terms which really are not medically accurate.

There really is no disease out there than can be CURED with medication. Yes, UC, some cancers, etc... can be "cured" with surgery, and pediatriac cancers with some medication, but you will be hard pressed to find any medication that "cures" a chronic condition. Cure meaning the disease state is gone, never to come back after treatment. We are good at at PREVENTING many conditions- polio, measles, and have evidence that avoidance of things can PREVENT diseases (smoking asbestos with COPD,) but we cannot understand the magnitude of what CURING a disease would mean since we really have not accomplished that very well.

We are also quite good now at extending and improving life of those with chronic conditions- HIV, autoimmune diseases, CHF, some cancers, even without curing them.

IBDers also need to understand that there are many folks simply on a 5-ASA and are back to normal. I've seen patients in their 60's and 70's with UC or CD for decades who do fine, have not needed surgery and no complications and don't need a "cure" per se.

But back to the topic at hand, finding a cure for a disease that is increasing in incidence and prevalence world wide, can indeed cause significant morbidity would be an absolute goldmine for whomever stumbles upon it.
 
JMC said:
Ignoring the fact that I think you are an order of magnitude too high on the commercial benefit of a Crohn's cure, where are the examples of drugs that cure a disease generating huge revenues either in the short or long term?
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Well okay, maybe I've overshot my estimate. But you have new drugs like Sovaldi that has about a 90% "cure" rate for HEP-C and I think will generate close to $10 billion in sales in its first year. And its just out sister drug Harvoni is expected to outpace even that.

I think when a "cure" for Crohn's is found whoever brings it to market will look at, for lack of a better term, the opportunity cost of the disease. So if they're curing it, how much costs are they saving from ongoing traditional treatment. I think in the US the average cost for care for CD is somewhere in the $10K ballpark if not using biologics, and close to $30K or more if you are. That adds up quickly year over year.

Maybe only the refractory cases will get approved for any expensive cure option, but likely many more will be clamoring for it.

All I'm getting at is that in my opinion, if someone were to find a cure for CD they'd work to bring it to market. I don't think there's some collusion between drug companies to sit on a cure so they can collectively peddle ongoing treatment therapies.
 
The fame and glory goes to the "inventor", not the company. We all remember Jonas Salk, but do we even know what company he worked for or what company produced the vaccine?

The money from that drug, or other drug would be a side point.
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A corporation that doesn't care about money :ylol:

but you will be hard pressed to find any medication that "cures" a chronic condition
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A straw man you've generously provided. Chronic, by definition, means we haven't figured out how to cure it. What we're really talking about the difference between the profitability of a drug you need continuously for the rest of your life versus something that can be a "one and done", whether the result is called a "cure" or not.

But back to the topic at hand, finding a cure for a disease that is increasing in incidence and prevalence world wide, can indeed cause significant morbidity would be an absolute goldmine for whomever stumbles upon it.
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And it would be tragic for those companies now trying to recover their R&D expenditures or booking profits on maintenance drugs.

Concerning insurance companies, they are simply machines. Like a blackjack dealer...although the dealer is just a machine, they are the one you see taking your money, so it's easy to hate them, but it's not their fault! And as mentioned, insurance companies are not playing the same game throughout the world; they are just especially annoying in the US. But other systems, like single payer, have their annoying aspects too.

I think the world is heading in the right direction: more smaller biotech companies that a breakthrough "cure" drug would be a pure bonanza, and no need to balance the equation of having a huge loss of a maintenance drug in one column and a questionable gain for the new "one and done" drug.

The problem, and this is an example for which I have personal experience, is that the big companies buy-up the small companies. For instance, my BIL worked for a company with about 15 MD PHD's that had a promising rat model having to do with islet cell restoration. They were happy to keep developing, but Novo Nordisk came along and gave them a buy-out offer so huge that nobody in the company could say "no". My BIL hasn't needed to work in years because of that influx. He's involved in other start-ups, but goes without a salary most often. Anyway, my BIL insists that something should have been said about the rat model by now, good or bad, and thinks it's simply been buried by a company that lives and breaths maintenance drugs. That's not me saying that, it's the guy who worked on the model. So, yes, maybe the model went nowhere and there was nothing to report. But maybe not. The point I'm trying to make is that these kinds of buyouts happen all of the time, so the more small companies that startup and resist that temptation, the better.
 
This whole discussion is missing a bigger picture. Curing something like crohn's is very difficult to accomplish. It's an umbrella disease whose root cause might be different in different individuals. Why is it that a small dose of Lialda keeps some people disease free for years at a time, and others fail every weapon out there?

I am a huge fan of SSI and I think Qu biologics is onto something. But even their approach will likely not work for everyone, and be a permament fix for many of those it does help. Disease states for multiple reasons (some we understand some we don't) present phenotypically in vastly different ways in different hosts. So "cure Crohn's" is a very naive statement we are all making, since there are so many different "crohn's" out there. Why do some with fecal transplants get "cured" and others actually get worse?

And it's true for so many other diseases- cancers, autoimmune diseases, infections. It's so hard to know what one condition will do to that particular host. and that is one reason a "cure" is very hard to find that will fit all.
 
baistuff said:
I think we are throwing around terms which really are not medically accurate.

There really is no disease out there than can be CURED with medication. Yes, UC, some cancers, etc... can be "cured" with surgery, and pediatriac cancers with some medication, but you will be hard pressed to find any medication that "cures" a chronic condition. Cure meaning the disease state is gone, never to come back after treatment. We are good at at PREVENTING many conditions- polio, measles, and have evidence that avoidance of things can PREVENT diseases (smoking asbestos with COPD,) but we cannot understand the magnitude of what CURING a disease would mean since we really have not accomplished that very well.

We are also quite good now at extending and improving life of those with chronic conditions- HIV, autoimmune diseases, CHF, some cancers, even without curing them.

IBDers also need to understand that there are many folks simply on a 5-ASA and are back to normal. I've seen patients in their 60's and 70's with UC or CD for decades who do fine, have not needed surgery and no complications and don't need a "cure" per se.

But back to the topic at hand, finding a cure for a disease that is increasing in incidence and prevalence world wide, can indeed cause significant morbidity would be an absolute goldmine for whomever stumbles upon it.
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Many cancers are cured through chemotherapy and bone marrow transplants; not just surgery. Bone marrow transplants have also cured autoimmune diseases, including Crohn's (of course they are very risky). Antibiotics and antivirals cure many infectious diseases. In fact, there is a new drug that recently came out that cures Hepatitis C. Some recent gene therapy and stem cell trials have cured blindness.
 
Let's not forget vaccines when it comes to successes. What are the reasons for there not being an ebola vaccine yet?
 
Reef08 said:
Many cancers are cured through chemotherapy and bone marrow transplants; not just surgery. Bone marrow transplants have also cured autoimmune diseases, including Crohn's (of course they are very risky). Antibiotics and antivirals cure many infectious diseases. In fact, there is a new drug that recently came out that cures Hepatitis C. Some recent gene therapy and stem cell trials have cured blindness.
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Besides some testicular tumors (which may be more a hormonal response) and some liquid malignancies (non solid tumors like hodgkins, some leukemias,) please name one cancer in adults that is CURED with chemotherapy. I will go organ by organ.

Breast- can be cured with surgery, highly responsive to HORMONAL treatment. Data suggests increases disease free survival with some chemo. No proof chemo CURES the disease. Radiation is of benefit

Prostate- Can be cured with surgery, also high responsive to HORMONAL treatment. Poorly responsive to chemo. Radiation shown to be of benefit

Lung- very little data to suggest chemo adds to disease free survival. Actually in advanced disease, studies show chemo worsens quality and quantity of life

Pancreatic- Poorly responsive to chemo

Stomach- poorly responsive to chemo

Esophagous- poorly repsonsive to chemo

Brain- Poorly responsive to chemo. Sometimes responsive to radiation

Primary liver- Poorly responsive to chemo

Head and neck squamous- Poorly responsive to chemo. Radiation may be of some benefit

Skin- melanoma- Can be cured surgically - Not treated with chemo. Some Antibody treatments, immunologics may be of benefit

Kidney- can be cured with surgery. Recent evidence shows some increased survival with various treatments, mostly biologic treatments

Colon- Can be cured with surgery. Increased disease free survival with chemo, but not considered curative

Soft tissue sarcoma- poorly responsive to chemo, can only be cured surgically.

GYN- poorly responsive to chemo. surgery can be curative if caught early. Vaccine to prevent cervical.

Thyroid- can be cured with surgery, RAI. Not very responsive to chemo

Malignant Schwannowa- treated surgically

Multiple Endocrine Neoplasia- poorly responsive to chemo


Also, keep in mind, except for testicular, ALL STAGE 4 (metastatic cancer) is considered incurable regardless of treatment method.


It is unclear why liquid tumors and testicular tumors respond. may have to do with the neovascular process in solid tumors. May because of other singaling pathways, hornmones, turnover of blood cells. Though keep in mind that most leukemias in adults and myeloma ares still not curable. Yes, can get some remissions, but they often return.


I also just did a literature search on "bone marrow transplants curing Autoimmune diseases" and came up empty. Can you please cite evidence to such a claim? I admit I don't know much about this subject, but certainly would welcome the change to read up on it.
 
Karma said:
Let's not forget vaccines when it comes to successes. What are the reasons for there not being an ebola vaccine yet?
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Vaccines certainly represents some og the best advances in modern medicine, and personally I think will be the key to dealing with many ailments.

They are not as easy as they sound though. Many viruses are tricky based on genetics, receptors, proteins inside and outside of viral cells. 15 years ago everyone said an HIV vaccine was around the corner. I remember a number of us having a good laugh at that one. Yeah, we will probably get one at some point, but they take time. Even the goddamn flu changes season to season, and that kills more than ebola or HIV nowadays.

Ebola until recently was not considered a virus needing a ton of effort. Prevention until recently was actually pretty easy. But since today we care that people with potential exposure can ride their bikes and sneeze in public b/c it's politically correct, more than we do actually taking some unpopular steps in stopping its spread, we are where we are. Once more people get it, we isolate more blood, study the virus, the antiboides to it, some of the responses to it- how it triggers DIC, vessel leakage etc... we will get there. Will just take time.
 
baistuff said:
Besides some testicular tumors (which may be more a hormonal response) and some liquid malignancies (non solid tumors like hodgkins, some leukemias,) please name one cancer in adults that is CURED with chemotherapy. I will go organ by organ.

Breast- can be cured with surgery, highly responsive to HORMONAL treatment. Data suggests increases disease free survival with some chemo. No proof chemo CURES the disease. Radiation is of benefit

Prostate- Can be cured with surgery, also high responsive to HORMONAL treatment. Poorly responsive to chemo. Radiation shown to be of benefit

Lung- very little data to suggest chemo adds to disease free survival. Actually in advanced disease, studies show chemo worsens quality and quantity of life

Pancreatic- Poorly responsive to chemo

Stomach- poorly responsive to chemo

Esophagous- poorly repsonsive to chemo

Brain- Poorly responsive to chemo. Sometimes responsive to radiation

Primary liver- Poorly responsive to chemo

Head and neck squamous- Poorly responsive to chemo. Radiation may be of some benefit

Skin- melanoma- Can be cured surgically - Not treated with chemo. Some Antibody treatments, immunologics may be of benefit

Kidney- can be cured with surgery. Recent evidence shows some increased survival with various treatments, mostly biologic treatments

Colon- Can be cured with surgery. Increased disease free survival with chemo, but not considered curative

Soft tissue sarcoma- poorly responsive to chemo, can only be cured surgically.

GYN- poorly responsive to chemo. surgery can be curative if caught early. Vaccine to prevent cervical.

Thyroid- can be cured with surgery, RAI. Not very responsive to chemo

Malignant Schwannowa- treated surgically

Multiple Endocrine Neoplasia- poorly responsive to chemo


Also, keep in mind, except for testicular, ALL STAGE 4 (metastatic cancer) is considered incurable regardless of treatment method.


It is unclear why liquid tumors and testicular tumors respond. may have to do with the neovascular process in solid tumors. May because of other singaling pathways, hornmones, turnover of blood cells. Though keep in mind that most leukemias in adults and myeloma ares still not curable. Yes, can get some remissions, but they often return.


I also just did a literature search on "bone marrow transplants curing Autoimmune diseases" and came up empty. Can you please cite evidence to such a claim? I admit I don't know much about this subject, but certainly would welcome the change to read up on it.
Click to expand...

You said no cancers can be cured via chemo. Now you're excluding blood cancers, even though those are valid examples.

Here's news about the recent Hepatitis C cure:
http://www.thestar.com/life/health_..._available_but_only_if_you_can_afford_it.html

Here are example of autoimmune diseases being cured by bone marrow transplants:

http://www.ncbi.nlm.nih.gov/pubmed/17908668

http://www.emaxhealth.com/1020/bone-marrow-transplant-potential-cure-crohns-disease

http://www.ctvnews.ca/health/scleroderma-patients-seek-experimental-u-s-stem-cell-therapy-1.2071491

http://ottawacitizen.com/news/national/stem-cell-advocates-therapy-launch-10-year-1-5b-action-plan

https://www.bcbsal.org/providers/policies/final/485.pdf
 
1) Youve cited some anecdotes- not hard evidence, and that is only in your first citation. Don't get me wrong, the case reports are important, but we don't determine what is a "cure" for the public baed on case reports. Should it warrant more studies? for sure.

2) please don't bring internet media outlets as evidence. They are not. Again. Let's study them, but to claim that have "cured" things is way premature. I've been on no meds and feeling fine 4 plus months post FMT, but you will NOT hear me say FMT cures crohns let alone me saying I myself am cured. It's factually inaccurate.

BTW- the 2 patients in the study on pubmed- how are they doing now 7 years later?

The new TREATMENT for hep C is exciting. Let's see about if it's a cure. viruses are a funny thing. Remember the baby who was "cured" of HIV a couple of years ago? woops.
 
Everyone is entitled to an opinion and there is surely many of them being voiced here!

If i owned Remicade or Humira and I was making several BILLION dollars a year out of it, i would want to protect my 'interests'. If a modern t-cell vaccine could potentially releive the disease state in hundreds of thousands of people with Crohns, who are currently my 'customers', each paying $40,000 a year to have Remicade or Humira, then it is in my interests to know about this new vaccine and if possible, to buy it.

That is just perfectly logical and there is no argument that we, as sufferers of Crohn's who are taking Remicade (or not) should be well prepared for a drug company to buy the vaccine (if it works) and then charge us as much money as they can to make as much money as they can from the 'cure'.

To suggest Baistuff, that any of us believe in conspiracy theories because we are stating the obvious- i think that is a bit much.
 
From what I've read, Prof. Hermon-Taylor has been working on this problem a long time. He's not growing any younger while he's trying to push this forward. My guess is that he and his colleagues will try to bring it to double-blind placebo controlled phase II trials. Hopefully that will show promising results and will spur interest from some big pharma companies to license it and take it to the next level, Phase III trials. Those are long, arduous, expensive processes. Then you have regulatory approvals, which is another matter onto itself. Research scientists can do the great work of discovery and proving out their research, it seems that bringing drugs to market is the work of pharmaceuticals.
 
You should always have some kind of scepticism I feel. When Janssens tried to extend their infliximab patents with years (all they got was 6 months), this wasn't in the interest of patients. http://www.ft.com/cms/s/2/3b389dae-b100-11e2-80f9-00144feabdc0.html#axzz3I3jFCeoA

When pharma claimed that etanercept was working for crohn's disease, only to find out years later through studies that etarnercept never worked for crohn's disease and many of the studies were manipulated. This wasn't in the interest of patients.

When doctors warned of the dangers of Tysabri, but pharma companies lobbied governments to use it anyway, and multiple people died in the studies. This wasn't in the interest of patients.

Primum non nocere, not harming the patient should always be the number 1 priority.

There are multiple cases where pharma has not been on our side. Yes we need better medication, and yes some people mean well, but let's not kid ourselves, at the end of the day this is about money, shareholders and profits.

The fact someone is willing to dedicate their life to help us, without any financial ties, he should get our support. There are other things people waste their money on, whether this vaccine is helpful or not, data will be gathered and we'll have a better understanding of crohn's disease regardless of the outcome.

And I say this as someone who has been tested for MAP twice, twice with negative results. Yet I still think crohn's disease patients deserve an answer to this question that has been debated for years.

All I can see is a very intelligent person who means well and is trying to help us. Crohn's disease is not a disease that gets a lot of media attention, our plight is often unheard. The few people who do mean well, and who go through extraordinary lengths to try to help us, and there is more than one, deserve our support and respect. They don't come around very often.
 
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Kiny,

You make an excellent point. Without delving too much into psycho-social norms and the psychiatry behind human motivation, it would be entirely inaccurate to assume that the individuals running the pharmaceutical companies actually want to make people better. The problem with the United States (and why no "cure" for any modern disease will ever come from our nation) is the current bureaucracy that essentially ensures pure, academic, "non profit driven research," can only be done in a university setting, where doctors are at the mercy of massive foundations (like the CCFA, which is a travesty of a foundation...funding massive studies into Remicade and can't even spare $15k for Dr. Taylor) to fund their research. Essentially, big pharma, through partnerships with foundations and an elaborate game of smoke and mirrors, assumes indirect control over the research being done.

I am HUGELY skeptical of these firms, as you can tell, but nothing's gonna come out of the US. Lean on systems where the actual incentive is to find a cure (read: single payor system) where the government drives incentives for a cure because it's paying for it (Canada: Qu Bio, Israel: RedHill Bio, Dr. JHT, UK)
 
Perhaps big pharma knows exactly what they are doing with biologics,if this testing is meaningful.
Killing MAP. One way or the other.
Don't know how this one slipped out it is a 2010 poster.
Old Mike
http://www.pulsus.com/cddw2010/abs/114.htm

Believe I have also read that specifically Remicade kills MAP infected macrophages, but will need to hunt that down again.
I have also been tracking papers that basically indicate that since 1942 just about all the IBD drugs except perhaps for pred control MAP,at least in culture or test tubes. So at the time they really did not know,but perhaps now they do.
 
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Hi, by the supporters of the theory MAP's as the origin of CD how can explain the intermittent outbreaks of Crohn's disease? An infectious disease can cause these symptoms intermittently? jonhe's disease there are periods of activity and periods of remission and inflammation?
 
kallaikoi said:
Hi, by the supporters of the theory MAP's as the origin of CD how can explain the intermittent outbreaks of Crohn's disease? An infectious disease can cause these symptoms intermittently? jonhe's disease there are periods of activity and periods of remission and inflammation?
Click to expand...

That's a good question, I think the difference being as humans we are able to seek help when we feel sick and therefore usually have the intervention of medicine to get into remission, lots of this medicine actually has anti map functionality.
 
rollinstone said:
That's a good question, I think the difference being as humans we are able to seek help when we feel sick and therefore usually have the intervention of medicine to get into remission, lots of this medicine actually has anti map functionality.
Click to expand...

What about spontaneous remission?
 
Johne's does not cause fistulas, fissures, and fibrostenosing disease. Cattle have 4 stomachs and chew their cud and are mostly herbivores.

minor differences only I'm sure. :)
 
Reef08 said:
What about spontaneous remission?
Click to expand...

Not sure about spontaneous remission, Not all cases of crohn's are caused by MAP, but at least some are, all you need for a diagnosis is idiopathic patchy inflammation through the intestines, some people have gone inro sustained remission from fmt, some have gone into sustained remission (histological) from the ssi vaccine, each have different modalities to how they work.. But the point I'm trying to make is there's definitely different underlying causes for crohns, it's an umbrella term. IMHO AIEC and MAP are two definitive culprits and I absolutely believe CD is pathogenic...
 
So with the 70k now raised does this mean the MAP diagnostic test will definitely be made? What is the timetable for this to be done?
 
Yes I definitely want to know more about this. I felt really happy when I've read the most recent articles, however I'm trying to not get my hopes up too high. I know this needs a lot of funding.....and I don't know if you lot think this will be hopeless....but recently there's been the ice bucket challenges and the no make up selfies to raise awareness and money for a particular cause. The ice bucket challenge in particular was great because it wasn't a 'mainstream' disease if you get me, and yet it raised such a lot of money and awareness. What does everyone think if we could get something going like this on Facebook and Twitter to raise awareness and money, along with informing everyone that a cure might not be far off if we just can get the funding! I was thinking of something like ..... #getyourbellyout and then post a photo of your belly (whether you've got a bag, whether you're bloated, whether you've got scars, show everything with pride!) and then tag your family and friends to do the same and donate to the charity. I'm sure they would show their support and before long it would pass along the line. What do you all think? Xxx :tongue:
 
Daytripper, please visit: https://www.facebook.com/crohnsmapvaccine and https://www.facebook.com/groups/crohnsvaccine/

We were just about to start a campaign like getyourbellyout in March but the original UK based campaign supporting CCUK launched it just slightly before us. So we missed that train and didn't want to "copy" the idea.

If anybody have any ideas how to get more publicity for this please send your ideas also to the CMV page.
 
Mattie said:
July 2014 paper from Dr Borody re MAP

http://www.futuremedicine.com/doi/pdf/10.2217/fmb.14.52
Click to expand...

Thank you very much.
●Targeting MAP using antibiotics
MAP has fulfilled Koch’s postulates as the cause
of CD[12], a set criteria used to prove causality of
a disease by a microorganism. As such anti-MAP
treatment is increasingly prescribed as a therapy
for CD using a combination of antibiotics that
targets MAP and has been shown to be quite
effective[13]. To prevent development of resist
-ance during long term therapy a combination of
antibiotics is required to target the bacterium at
all stages of the life cycle including reproduction
and dormancy. A randomized controlled trial
in CD using such a combination is currently in
progress and this could prove the effectiveness
of a therapy that targets the MAP organism
[14].
Click to expand...
Authors refer to this trial:
http://www.clinicaltrials.gov/show/NCT01951326

Drug: RHB-104
95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine
5 RHB-104 capsules administered orally BID

I've used clarithromycin 500mg twice a day for 10 days. Used it for intestinal infection. Along with other side effects, psychological side effects were unbearable.

I don't have any experience with the other antibiotics but I'm deeply concerned about long term use of RHB-104.
-------------------------------------------
Some links on natural inhibitors:
http://www.ncbi.nlm.nih.gov/pubmed/18676709
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2233768/
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029631
 
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Crohn2357 said:
Thank you very much.

Authors refer to this trial:
http://www.clinicaltrials.gov/show/NCT01951326

Drug: RHB-104
95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine
5 RHB-104 capsules administered orally BID

I've used clarithromycin 500mg twice a day for 10 days. Used it for intestinal infection. Along with other side effects, psychological side effects were unbearable.

I don't have any experience with the other antibiotics but I'm deeply concerned about long term use of RHB-104.
-------------------------------------------
Some links on natural inhibitors:
http://www.ncbi.nlm.nih.gov/pubmed/18676709
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2233768/
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029631
Click to expand...

What psychological side effects were you having if you don't mind me asking? I thought most people tolerated the therapy well. At least everyone iv spoken to has
 
It would be nice if someone start a nice topic about the vaccine on places like reddit. I saw a topic about lyme disease vaccine on reddit today. It is highly upvoted.
There are these topics:
http://www.reddit.com/r/CrohnsDisease/comments/1huo3y/what_happened_to_all_the_hype_about_treating/
http://www.reddit.com/r/CrohnsDisease/comments/1x3hyu/is_a_cure_for_crohns_disease_in_sight/
http://www.reddit.com/r/CrohnsDisea...ns_map_vaccine_info_truly_hoping_this_is_the/
But a topic more worthy of attention maybe can reach high votes and help raising awareness. Just an idea.
 
In any case, funding a 2.6 million dollar vaccine to determine whether a multi-billion dollar disease can be cured seems like a viable option to me. This has become public enough that if it disappears, people will ask questions.

And to the point of the person who gave the novonordisk story - JHT doesn't give two s***s about money, at this point. He's dedicated 30 years of his life to this pursuit, he's pushing 80, and he still goes to work every day to figure this out.

Maybe he wants to pass some money on to his kids? Then again, I'm pretty d*** sure that Amy Hermon Taylor doesn't care either, unless her genuine empathy and compassion is all fake - and believe me, if it was, she would be selling people on the big screen as an actress, for the quality of the performance she can put on.

People deserve to have an answer to this godforsaken controversy, and whether it's a yes or a no, it will push the progress of Crohn's research ahead - because if no, people can stop whining about whether or not it cures the disease.
 
What I like about the professor's MAP vaccine is that it moves the mark to push for treating CD with a vaccine, rather than the current small/large molecule agents. There is some really promising advancement being made on the vaccine front. Just yesterday some news came across the wires about using a vaccine to stop progress of breast cancer in a large percentage of the study group. Even if MAP proves not to be the catch-all antigen, there seems to be some strides being made in identifying the culprits and hopefully developing vaccines targeting those.

And the recent rash of publicity in developing an Ebola vaccine is channeling billions of new £$¥ in the general direction of vaccines development.

I'm cautiously optimistic this nut will be cracked in the next decade.
 
xeridea said:
What I like about the professor's MAP vaccine is that it moves the mark to push for treating CD with a vaccine, rather than the current small/large molecule agents. There is some really promising advancement being made on the vaccine front. Just yesterday some news came across the wires about using a vaccine to stop progress of breast cancer in a large percentage of the study group. Even if MAP proves not to be the catch-all antigen, there seems to be some strides being made in identifying the culprits and hopefully developing vaccines targeting those.

And the recent rash of publicity in developing an Ebola vaccine is channeling billions of new £$¥ in the general direction of vaccines development.

I'm cautiously optimistic this nut will be cracked in the next decade.
Click to expand...




This is probably the most intellegent post on this board about MAP.
 
To the above post:

Everyone will always disagree about the cause of an issue, whatever its nature. The fact of the matter is that we need to appreciate people who work tirelessly to try and find answers, whether they be right or wrong.

Whatever the outcome of the current studies on MAP (RHB 104, the vaccine), at least we have people fighting for us. That's all we can ask. If, at the end of the day, MAP isn't the cause, this man dedicated 30 years of his life to trying, and we can't fault that, at all. Not to mention the fact that an ANSWER, no matter what that answer is, will be good for us. If MAP is not the cause (as it is discovered) then those who are putting time and money into figuring that out can redirect their efforts to the next target, eliminating potential culprits and causality until we find the solution.

Support those who are working for us in any way you can. Not saying financially. Send them your prayers, or your thoughts, or if you feel like making a donation, your money. Help fundraise. Mentor people with the disease. The greatest issues in the world are solved by a communal intention to derive a solution - 1000 people working toward a common goal is better than 1.

:)
 
To the post above:

Pre-GMP (General Manufacturing Process) manufacturing has begun (which will take approximately 3 months. Assuming funding goals are met, the GMP manufacturing process will take approximately 1 year, after which the human trials will start (another year). During the trial phase, the manufacturer will aim to make the vaccine available on a named-patient basis, which will allow people with need to receive the vaccine.

This is, of course, assuming funding goals are met.
 
Latest post on the Crohn's MAP Vaccine fb site:
(In the end also a link to the JustGiving page where you can see the latest state of play re the fundraising...)

Here Come the Heroes!

Would you like to know who the Crohn's MAP Vaccine Heroes are? If yes, please continue reading and watch this place in the coming days...

We live half a world away from each other, but share a bond that is unshakeable. We are the Crohn's MAP Vaccine Heroes, a growing team consisting of “Crohnies”, devoted parents of “Crohnies”, an endearing grandfather of a “Crohnie” and last but not least, the daughter of the inventor of the Crohn's MAP Vaccine who ran her very first marathon - and another one - just to raise money for our cause. Why are we so passionate about our fundraising efforts? The answer is simple - Crohn’s MAP Vaccine is very likely the cure that we have all been waiting and hoping for.

For three decades, Professor Hermon-Taylor has been a champion of Crohn’s sufferers around the world, most of whom are unaware of his steadfast and indomitable perseverance in the face of bitter debate by his peers. During this time he has tenaciously studied and analysed MAP and its role in Crohn’s Disease and has devoted his retirement years to developing a vaccine that will very possibly bring an end to the suffering of millions. The tide is turning and even some of the most ardent critics can no longer ignore the mounting evidence that MAP plays a very significant role in causing Crohn’s Disease.

Would you like to play a part in the making of medical history? The incredible Crohn's MAP Vaccine story is unfolding and you can be a part of it! For the first time, we have very real hope. The finalisation of the development of the very important, simple diagnostic MAP blood test will bring this vaccine to the human trial stage. The only thing that stands in the way of completing both the test and the human trial is a lack of funding. Crohn’s MAP Vaccine Heroes have collectively raised more than £75,000 on the way to our next intermediate target of £120,000. That’s where you can play a significant role. Will you be our next Crohn’s MAP Vaccine Hero? Will you pick up the baton and help take Professor Hermon-Taylor’s Crohn’s MAP Vaccine through the finish line? We WANT YOU and we NEED YOU!

If you would like to be a Crohn's MAP Vaccine Hero, please send us a message on our Facebook page and we will help you get started.

***
IT'S TIME TO CURE CROHN'S!
https://www.facebook.com/CrohnsMAPVaccineHeroes
https://www.justgiving.com/teams/crohnsmapvaccineheroes
https://www.crowdrise.com/fundraise-and-…/…/crohnsmapvaccine
http://crohnsmapvaccine.com/
 
Wow, this study is very interesting! I am not sure if it is good news, or depressing news! I wonder if the new antibiotic that was recently discovered will help. Also, if this "zombie" state happens with MAP, could that help explain spontaneous remissions and subsequent flares?
 
I am understanding that MAP is very different to tuberculosis…one similarlity is obviously the name, but i think that is about it….i wouldnt worry too much about it….Hermon Taylor has tested it on mice, cows and it wont be long until we can get it I HOPE and it will WORK….stay positive crew.
 
You can beat this into submission through diet and threelac but just know that if you go off your diet you will eventually cause it to come back... if you choose to fight it with antibiotics go on a very strict no sugar no gluten diet. you may get lucky and kill it off... at least for a while...
 
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"The Hundred Years War - Beyond Crohn's Disease" looks at the causal role of MAP in a range of so-called autoimmune diseases.

"Perhaps more incriminating for MAP as a zoonotic agent is the increasing number of diseases with which MAP has been related: Blau syndrome, type 1 diabetes, Hashimoto thyroiditis, and multiple sclerosis. In this article, we debate about genetic susceptibility to mycobacterial infection and human exposure to MAP; moreover, it suggests that molecular mimicry between ... MAP and human proteins is a likely bridge between infection and these autoimmune disorders."

http://journal.frontiersin.org/article/10.3389/fimmu.2015.00096/full
 
Himoura said:
You can beat this into submission through diet and threelac but just know that if you go off your diet you will eventually cause it to come back... if you choose to fight it with antibiotics go on a very strict no sugar no gluten diet. you may get lucky and kill it off... at least for a while...
Click to expand...
What is threelac?
 
Poppysocks said:
What is threelac?
Click to expand...

It's a pretty expensive probiotic. It really turned my life around but it can't cure you. It just inhibits the progression of the bacteria and can even heal up your intestines to an extent (I had only minor bleeding so I am not sure about effectiveness in extreme cases). Between diet and three lac I went into remission for years with only minor symptoms but it finally caught up with me.

I had gotten so carried away being able to eat and drink I didn't realize it was coming back. When it did I ended up in the hospital three times with sever shortness of breath and gallbladder attacks. I had to have my gallbladder removed and basically almost died. I think my infection went systemic? Was my fault for thinking I could be normal I guess.

So anyway the threelac can help you to be partially normal and even eat some things but don't get too carried away. It can't cure you. I still have to take the threelac and diet now or I will get really sick. (I have tried to go off it and I can't or I will go back to not being able to function and extremely limited diet)

The good News is that the threelac might help avoid bleeding and intestinal surgery and it's completely safe. I have been on it for many years.

All I can offer here is a bandaid... let's just hope the vaccine works...
 
At first I thought I had candida so I went on a no sugar no gluten diet. I think I am an extreme and rare case as my symptoms came on quick because I was working a construction job that exposed me to a soap chemical I had to breathe all day. This could also explain why I had minimal intestinal bleeding but insane shortness of breath. The diet stopped the burning but I began to lose a ton of weight and found I couldn't eat hardly anything anymore.

That's the trick. No sugar no wheat. I stayed on that diet for about a year or so before I found Threelac and then between the two I got healthy enough to start working and having something that resembled a life again.

I still have to be careful though. Stray to far off the diet and I could land right back in the hospital.
 
wellen1981 said:
http://www.crohnsforum.com/showthread.php?t=69505

Thoughts?
Click to expand...

I am achieving the same results with diet and threelac. Just like she says though it always comes back if you start eating sugar; it feeds the bacteria which renders all your efforts meaningless. You have to stay on the diet or you will eventually go out of remission. I ended up in the ER.

Something very interesting she says that I also experienced is that the further along you get you start burping. I could drink a glass of water and I burp as if I drank a can of soda. It's really obnoxious. Coffee, smells, alcohol, sugar and wheat. These are the biggest things I need to avoid at all costs to stay in remission. I can get health enough to eat a little sugar here or there but it just isn't worth it.

I really hope Dr Hermans vaccine can cure this. Does anyone have any idea when the test will become available? Is there any way to be tested for maps outside of the new smart test? Crohns girl says there is but I googled what she said and it doesn't pull up anything.
 
well said Himoura.
I concur.
coffee, alcohol, sugar and wheat = big no no for me.
particularly sugar.
sugar is so mean, you get the sugar rush, - gives you a tiny bit of energy, which is nice…but long term it messes with you.
forget processed sugar!!!
cocacola, fizzy drinks are a BIG no no.
wheat is easy to avoid these days.

as for the test - it is coming.
via Dr Naser in the USA and Dr Hermon Taylor in the UK.
Wont be long until licensed and available in the US, UK, Australia, South Africa and the other countries where crohns is rife.

good luck everyone.
 
happy poo poo said:
well said Himoura.
I concur.
coffee, alcohol, sugar and wheat = big no no for me.
particularly sugar.
sugar is so mean, you get the sugar rush, - gives you a tiny bit of energy, which is nice…but long term it messes with you.
forget processed sugar!!!
cocacola, fizzy drinks are a BIG no no.
wheat is easy to avoid these days.

as for the test - it is coming.
via Dr Naser in the USA and Dr Hermon Taylor in the UK.
Wont be long until licensed and available in the US, UK, Australia, South Africa and the other countries where crohns is rife.

good luck everyone.
Click to expand...

Excellent thank you for your post!

Dr Naser? I'm gonna try to get in contact with him. Is there any contact information available?

Edit~. Never mind I think I found it. Dr Saleh Naser at UCF in central Florida!!! That's only 3 hours away from me. :D
 
RedHill Bio has licensed UCF MAP test technology and is working with Quest Diagnostics to develop a commercial version for U.S. market as part of their current Phase 3 trials of triple antibiotic treatment. That may likely restrict availability of test to trial participants. So if you hit wall contacting Nasser directly see if you can enroll in trial?
 
Just thought I'd post to suggest checking out the 9 part Prof Borody vids on youtube as it goes quite a way to explaining a lot of the things mentioned above, but rather than thoughts it backs up things with evidence.

After my diagnosis last April I spent many months researching to learn all I could about Crohn's and I tried to focus on sources that could be verified, backed up and proven.

Things I learnt along the way were a revelation.

I now understand enough about microbiology to realise that having these conditions means we have to be do right by ourselves in realising and learning that while having this condition we can harm ourselves by eating without knowledge.

One of the first things I learnt was fructose, lactose, and yeast are bad as on a basic level sugars are what things like to use as energy first and foremost.

As for wanting sugar for energy you have to get educated on understanding fatigue more and learn about saline and the importance of the right balance of water and salt in the body - also helps to know that 70% of poop is water so if you are going to the toilet often or after going to the toilet you feel fatigued - you dont need sugar, you need saline so drink a cup of water and munch a bag of salted crisps/chips. Give yourself an hour after and you will have energy again.

As for pain, if you don't have a current obstruction but are in pain in your guts I find eating white rice brings my pain down over a few days and if I eat white rice often enough - the pain actually went completely.

The big one... MILK - Through a very strict diet of exclusion I have come to learn that the lactose in milk makes me very ill but having been tested I am not lactose intolerant.
Switched to lacto free milk and only have it on morning rice crispies (see, rice again) and my morning cup of tea (honestly am trying to switch to herbal teas so I can ditch caffeine completely).

Caffeine is a stimulant and I can tell it makes things worse in my gut especially if I have a coffee (even decaff due to it having some caffeine in it).

I didn't plan to write any of the above but thought others may find it useful.

I should also add that I still have all my guts, don't suffer pain anymore since changing my diet (it was so bad before I spent 2 days a week in bed for the best part of a year), and I am not on any meds - all treatments on offer are working on the premise of managing symptoms anyway but I dont want to be a slave to the meds if i am able to manage by altering my diet instead.

I must end by saying that the above only really covers the symptom side of Crohn's and the work of Borody and Herman Taylor are where I am looking to for the most targetted treatment of the disease itself.

There is evidence to support the understanding that it is not just 1 specific type that causes the conditions but possibly multiple types.
However for people with MAP (in cattle see Johnes disease), the anti-map therapy is proven to be the most effective treatment and yet it still hasnt been introduced everywhere yet.

The sad truth of the matter is that these things take time to go through all the 'proper protocols' before they are used by every hospital up and down a country, tragically though those with the disease are being denied the best treatments and are also having their basic human right to a good quality of life denied by the very health organisations that are supposed to be treating them.
 
wellen1981 said:
Just thought I'd post to suggest checking out the 9 part Prof Borody vids on youtube as it goes quite a way to explaining a lot of the things mentioned above, but rather than thoughts it backs up things with evidence.
Click to expand...

The good thing is that Prof. Borody's anti-MAP protocol is currently undergoing a well designed randomized, double blind, placebo-controlled, multicenter (63 sites), parallel group study which will give us a good answer on the role of MAP in Crohn's. It's my understanding that the participants will be tested by a new, very sensitive diagnostic test for the presence of MAP. Hopefully the study results will show what proportion of patients tested positive for MAP. That info in itself will hopefully go a long way in settling the MAP-Crohn's controversy. Study runs through November 2016 so we just have to bide our time.

It's good to hear you're having positive results managing your symptoms via diet. There's got to be something there too, though no one's quite seemed to figure out what works for everyone.

Hope scientists and researchers continue their efforts so we get a definitive answer...
 
xeridea said:
It's good to hear you're having positive results managing your symptoms via diet. There's got to be something there too, though no one's quite seemed to figure out what works for everyone.

Hope scientists and researchers continue their efforts so we get a definitive answer...
Click to expand...

The dietary treatment of Crohn's has already been established through the LOFFLEX diet protocol...the dietary answer for UC has yet to be defined, although probiotics may have the answer.
 
Too many of us are all describing the same thing. Sure there could be other causes like other types of mycobacteria, but so many people are having most of the same symptoms. I have come up with a protocol that can put a person into a deep remission and maybe even kill the bug. Of course you could easily reinfect yourself, but if that ever happens simply repeat the protocol. (Disclaimer: I am not a medical professional and assume no responsibility for anyone else. This is simply an example of what works for me personally and what I have learned in the last 10 years with this disease.)

Diet. This is the cornerstone. No sugar (absolutely as little as possible), no wheat and no lactose. This is to starve the bacteria. For example I eat two eggs with Ezekiel bread every morning. Rice and vegetable bowl for lunch. Two more pieces of Ezekial bread with butter and some beans for dinner. The butter is real cream. It has virtually no lactose. It's important to drink lots of water (this is a lot of fibre) on this diet and you can snack on corn chips or potato chips.

Probiotic. I like threelac but you do whatever you can afford. Combine diet and probiotic until your stomach goes back to normal and you have no bleeding. I would even wait a couple of weeks, at least after normalization. You can even take some vitamin e once you feel better to help speed up the healing.

Food grade Diatomaceous Earth. Begin with one scoop or rounded tablespoon every morning and drink lots of water. This has made a huge impact on me and I am super happy I found this stuff. I would caution anyone with lots of surgeries or bleeding to make sure you heal with the steps above before you try this. My father takes it and he had a colostomy bag so I am sure it's safe but better to err on the side of caution.

The silver bullet. This is the last thing I can offer. Only do this if you think you have achieved full remission. Once you do it, if the bacteria did not die it will simply adjust. This is a one time shot unless you kill the bacteria completely. Oil of Oregano. Get the horse pills and take 1 pill 3x a day for 7 days. It's one of the most powerful antibiotics I ever tried and it's completely natural. It completely cured me for two weeks. I thought I was cured and like an idiot began smoking and eating fast foods. I fed the bacteria back to life and it adjusted. It will never work for me again. The weakness of the oil is that the bacteria can adjust to it if you continue feeding it with sugar and junk food.

So that is it. If you achieve full remission with this congratulations, but just know that it could either be dormant and come back or you could reinfect yourself. In either scenario simply repeat the protocol and try not to get too carried away. It's very euphoric thinking your possibly cured.
 
Last edited:
Himoura said:
Too many of us are all describing the same thing. Sure there could be other causes like other types of mycobacteria, but so many people are having most of the same symptoms. I have come up with a protocol that can put a person into a deep remission and maybe even kill the bug. Of course you could easily reinfect yourself, but if that ever happens simply repeat the protocol. (Disclaimer: I am not a medical professional and assume no responsibility for anyone else. This is simply an example of what works for me personally and what I have learned in the last 10 years with this disease.)

Diet. This is the cornerstone. No sugar (absolutely as little as possible), no wheat and no lactose. This is to starve the bacteria. For example I eat two eggs with Ezekiel bread every morning. Rice and vegetable bowl for lunch. Two more pieces of Ezekial bread with butter and some beans for dinner. The butter is real cream. It has virtually no lactose. It's important to drink lots of water (this is a lot of fibre) on this diet and you can snack on corn chips or potato chips.

Probiotic. I like threelac but you do whatever you can afford. Combine diet and probiotic until your stomach goes back to normal and you have no bleeding. I would even wait a couple of weeks, at least after normalization. You can even take some vitamin e once you feel better to help speed up the healing.

Food grade Diatomaceous Earth. Begin with one scoop or rounded tablespoon every morning and drink lots of water. This has made a huge impact on me and I am super happy I found this stuff. I would caution anyone with lots of surgeries or bleeding to make sure you heal with the steps above before you try this. My father takes it and he had a colostomy bag so I am sure it's safe but better to err on the side of caution.

The silver bullet. This is the last thing I can offer. Only do this if you think you have achieved full remission. Once you do it, if the bacteria did not die it will simply adjust. This is a one time shot unless you kill the bacteria completely. Oil of Oregano. Get the horse pills and take 1 pill 3x a day for 7 days. It's one of the most powerful antibiotics I ever tried and it's completely natural. It completely cured me for two weeks. I thought I was cured and like an idiot began smoking and eating fast foods. I fed the bacteria back to life and it adjusted. It will never work for me again. The weakness of the oil is that the bacteria can adjust to it if you continue feeding it with sugar and junk food.

So that is it. If you achieve full remission with this congratulations, but just know that it could either be dormant and come back or you could reinfect yourself. In either scenario simply repeat the protocol and try not to get too carried away. It's very euphoric thinking your possibly cured.
Click to expand...

No disrespect but your logic is flawed on multiple points to the result that some of what you did is a red flag and dangerous.

The way you went about things resulted in mistakes being made and at times cost you dearly.

While I admire your honesty in your post regarding disclosure of the mistakes, for anyone else reading it not knowing what exactly to do (that's myself included), all credibility of what you posted is ruined unless you were showing and demonstrating logic and were backing things in the post up with actual sourced data and scientific knowledge anyone reading can then verify.

I have had issues for over 10yrs now but only got really ill in aug 2012 and got diag with CD in apr 2014, so i respect if you have had it for 10yrs and your diag was then that you may know more than the rest of us that have not had our diagnosis that long. But it would be unwise for me to assume that just on the basis of how long one of us has had the condition and also years of having the condition will not ever equate to a persons ability to know subject matter.

I do respect you and your post and honestly thanks, i will take the time to go diggin about the things you cover in your post to see if in amongst the bad things that happened in your journey, there is anything that can be used to positive effect with regards to managing the condition. Will post back once i have looked into the things you covered.

Thanks again for posting and sorry you had the stumbles you did that cost you dearly.
 
I am increasingly of the opinion that diet is important and avoiding foods that may cause reinfection with MAP is essential. I am currently in the middle of my own experiments with diet which have over the last 6 weeks produced positive results, but it is too early to draw any firm conclusions and I will come back when I have at least 3 months of information to work with. The bottom line IMO however, is that if you are not carefully thinking about and refining your diet you are probably not as healthy as you are capable of being.
 
JMC said:
I am increasingly of the opinion that diet is important and avoiding foods that may cause reinfection with MAP is essential. I am currently in the middle of my own experiments with diet which have over the last 6 weeks produced positive results, but it is too early to draw any firm conclusions and I will come back when I have at least 3 months of information to work with. The bottom line IMO however, is that if you are not carefully thinking about and refining your diet you are probably not as healthy as you are capable of being.
Click to expand...

As you are in london what are your thoughts on going on anti-map therapy at guys at st thomas or are you already doing it?

Also the problem with cause of reinfection risk is that the MAP can only be attempted to be destoryed at the moment it divides and it according to those in the know, is a very resilient, slow multiplying bacteria that can take year(s) to divide and be vulnerable to destruction from the anti-map therapy.

What do you think about the current level of care offered in the uk fro nhs and private? Are you as disappointed as i am that patients are not able to chose a more targetted treatment at ANY nhs hospital when guy and st thomas in london are already offering it - i am faced with additional difficulty of being forced to have to travel to there if i want this treatment, utter madness and evidence the nhs is failing us patients.
 
wellen1981 said:
No disrespect but your logic is flawed on multiple points to the result that some of what you did is a red flag and dangerous.

The way you went about things resulted in mistakes being made and at times cost you dearly.

While I admire your honesty in your post regarding disclosure of the mistakes, for anyone else reading it not knowing what exactly to do (that's myself included), all credibility of what you posted is ruined unless you were showing and demonstrating logic and were backing things in the post up with actual sourced data and scientific knowledge anyone reading can then verify.

I have had issues for over 10yrs now but only got really ill in aug 2012 and got diag with CD in apr 2014, so i respect if you have had it for 10yrs and your diag was then that you may know more than the rest of us that have not had our diagnosis that long. But it would be unwise for me to assume that just on the basis of how long one of us has had the condition and also years of having the condition will not ever equate to a persons ability to know subject matter.

I do respect you and your post and honestly thanks, i will take the time to go diggin about the things you cover in your post to see if in amongst the bad things that happened in your journey, there is anything that can be used to positive effect with regards to managing the condition. Will post back once i have looked into the things you covered.

Thanks again for posting and sorry you had the stumbles you did that cost you dearly.
Click to expand...

Your a very condescending person and I don't really appreciate your negativity or ad hominem attacks. There is nothing flawed in my logic I think you just like to hear yourself sounding superior.

If you don't like what im doing then don't do it. Nobody is asking you to do anything.
 
Himoura said:
Your a very condescending person and I don't really appreciate your negativity or ad hominem attacks. There is nothing flawed in my logic I think you just like to hear yourself sounding superior.

If you don't like what im doing then don't do it. Nobody is asking you to do anything.
Click to expand...


Sorry you feel that way.
I had hoped you would understand the points I raised amongst my reply but also knew there was a chance you would not accept it so for any offence caused, i apologise but it was not my intent.

Sorry
 
wellen1981 said:
As you are in london what are your thoughts on going on anti-map therapy at guys at st thomas or are you already doing it?
Click to expand...

Yes, I am in London. I am treated at Bart's and the Royal London where there isn't any anti-MAP therapy on offer. I regularly ask my doctor (Prof Rampton) to consider MAP as the cause of my illness but he is sceptical.

wellen1981 said:
Also the problem with cause of reinfection risk is that the MAP can only be attempted to be destoryed at the moment it divides and it according to those in the know, is a very resilient, slow multiplying bacteria that can take year(s) to divide and be vulnerable to destruction from the anti-map therapy.
Click to expand...

And worse, many of the current therapies (e.g. Humira)may be just putting MAP into a dormant state which is why flare ups are common if you stop them.

wellen1981 said:
What do you think about the current level of care offered in the uk fro nhs and private? Are you as disappointed as i am that patients are not able to chose a more targetted treatment at ANY nhs hospital when guy and st thomas in london are already offering it - i am faced with additional difficulty of being forced to have to travel to there if i want this treatment, utter madness and evidence the nhs is failing us patients.
Click to expand...

All my surgery has been private which has been excellent. NHS treatment has been more variable and closed minded.
 
wellen1981 said:
Sorry you feel that way.
I had hoped you would understand the points I raised amongst my reply but also knew there was a chance you would not accept it so for any offence caused, i apologise but it was not my intent.

Sorry
Click to expand...

Well I appreciate the apology but i got upset because you totally twisted my post around and tried to make it sound like I'm some crank over here doing dangerous stuff to myself and it "almost cost me dearly". Give me a break man.

Number one. The only reason I even landed in the ER at all is because I was in remission for 3-4 years and had gotten used to being able to drink alcohol and eat whatever I want. I didn't realize the bacteria was just dormant and snuck back up on me. I have had more success keeping myself in remission than anyone I have ever met or read about except the handful of lucky people who got a triple antibiotic treatment and it actually worked.

Number two. I am not doing anything "dangerous" too myself. Threelac and DE are extremely safe and I researched both incessantly before trying them. I can't even find one negative post about DE. I'm honestly just being overly cautious since there could be some really sick folks in this thread.

Number three. Honestly I think it's your logic that's flawed. I am glad for you that you feel like you have plenty of time to wait around for quality research but some of us don't feel like they have much time. "Desperate", "nothing to lose" are words I would use to describe this disease when it's in full swing. It's a nightmare. I have been suffering with Crohns for over 10 years but was only recently diagnosed. The medical community in general is just really behind the times. I had a GI tell me that if I had an ulcer the only treatment option available to me would be surgery. Really?! I asked him if he knew who Dr Barry Marshall was and he looked puzzled and said "never heard of him". He has been practicing for over 30 years. He also neglected to check my biopsy for h.pylori after my endoscopy. He said there was no need.

It's great that Dr Taylor may have figured this out. I applaud him and his daughter but most of the medical community could care less. They learn what they learn in school and that's it. They don't typically dig any further because most believe they have been taught everything there is to know about their field.

So if you feel you have plenty of time to wait for this vaccine that's awesome man I'm happy for you but a lot of us don't. The vaccine is still what... 5 yrs away?. I really didn't think I was gonna make it much longer after last year but getting the Crohns diagnosis and finding this community has really helped me to finally put all the pieces together and make sense out of what worked and what didn't and why. I think I got lucky with the three lac and it really kept my intestines from deteriorating, but it also prevented me from getting the Crohns diagnosis sooner since it's basically a diagnosis of exclusion or you get so sick it becomes obvious and requires surgery.
 
I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed.

Can anyone comment on that before I have to dig out my immunology books again?

In those people however the antibiotic therapy is still a viable option.
 
Himoura said:
Well I appreciate the apology but i got upset because you totally twisted my post around and tried to make it sound like I'm some crank over here doing dangerous stuff to myself and it "almost cost me dearly". Give me a break man.

Number one. The only reason I even landed in the ER at all is because I was in remission for 3-4 years and had gotten used to being able to drink alcohol and eat whatever I want. I didn't realize the bacteria was just dormant and snuck back up on me. I have had more success keeping myself in remission than anyone I have ever met or read about except the handful of lucky people who got a triple antibiotic treatment and it actually worked.

Number two. I am not doing anything "dangerous" too myself. Threelac and DE are extremely safe and I researched both incessantly before trying them. I can't even find one negative post about DE. I'm honestly just being overly cautious since there could be some really sick folks in this thread.

Number three. Honestly I think it's your logic that's flawed. I am glad for you that you feel like you have plenty of time to wait around for quality research but some of us don't feel like they have much time. "Desperate", "nothing to lose" are words I would use to describe this disease when it's in full swing. It's a nightmare. I have been suffering with Crohns for over 10 years but was only recently diagnosed. The medical community in general is just really behind the times. I had a GI tell me that if I had an ulcer the only treatment option available to me would be surgery. Really?! I asked him if he knew who Dr Barry Marshall was and he looked puzzled and said "never heard of him". He has been practicing for over 30 years. He also neglected to check my biopsy for h.pylori after my endoscopy. He said there was no need.

It's great that Dr Taylor may have figured this out. I applaud him and his daughter but most of the medical community could care less. They learn what they learn in school and that's it. They don't typically dig any further because most believe they have been taught everything there is to know about their field.

So if you feel you have plenty of time to wait for this vaccine that's awesome man I'm happy for you but a lot of us don't. The vaccine is still what... 5 yrs away?. I really didn't think I was gonna make it much longer after last year but getting the Crohns diagnosis and finding this community has really helped me to finally put all the pieces together and make sense out of what worked and what didn't and why. I think I got lucky with the three lac and it really kept my intestines from deteriorating, but it also prevented me from getting the Crohns diagnosis sooner since it's basically a diagnosis of exclusion or you get so sick it becomes obvious and requires surgery.
Click to expand...

You don't have to explain yourself, again I am sorry for what I can honestly say was a very quick (read that as abrupt) post by myself that was not one of my 'better' moments of thought.
I should have took the time to just post in a decent, productive way so as not to cause as much offence to you as I did.
It was only when you replied that I realised my post fell short of what I was trying to say.

Believe it or not, you and I are in very similar positions time wise and also with regards to understanding how pressured we all are to find the best solutions to the conditions.

I don't think you are a quack. Far from it.
 
King of Orange said:
I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed.

Can anyone comment on that before I have to dig out my immunology books again?

In those people however the antibiotic therapy is still a viable option.
Click to expand...

From researching what Prof Borody had to say it appears that the only time the bacteria are vulnerable is at division stage and (i only watched the videos once) something along the lines of happening once a year or longer was mentioned on the videos... Borody states MAP is a very slow bacteria.

Here's the links, 9 parts about 10mins long each - I'm sorry I cant recall which part has the comments about division timeframes but i think it may be one of the middle vids maybe pt3-pt6?

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


HTH
 
Latetst news on Crohns MAP Vaccine:

On 26.02.2015 the Advisory Committee on Dangerous Pathogens met to review the issue of MAP in Crohn's disease for the first time since 2005. This review was requested by Jeremy Hunt (Secretary of State for Health) following a letter from Nicola Price (of the Crohn's MAP Vaccine core team), who wrote to him in November 2013 regarding this issue. Their report has just been published online and you can read it on our news page here:

http://crohnsmapvaccine.com/review-...ubsp-paratuberculosis-map-and-crohns-disease/

The original source of this document is:
https://www.gov.uk/government/groups/advisory-committee-on-dangerous-pathogens
You will find it under 'Minutes' by clicking on 'Minutes, papers and agendas'

Dr Irene Grant, commissioned to write the report, is a senior lecturer in Microbiology and food safety at Queens University Belfast. Whilst she maintains that 'it is difficult to draw firm conclusions about MAP in CD at present', she does highlight the following statement from Dr Ingrid Olsen (Norwegian MAP expert): 'Together with all the genetic susceptibility data emerging over the last decade, it is very hard to reject the hypothesis of mycobacteria being involved in the development of CD in at least a sub-cohort of patients'. Her report also identifies, specifically in regard to MAP testing, that 'further research is clearly needed'.

We are very pleased that an independent expert has endorsed this field as an important area of research. We note that the report does not make any recommendations as to what actions should be taken –hopefully that will be the next step!

We would also like to take this opportunity to thank Crohn's and Colitis UK and Rick Parfitt Jnr and The RPJ Band once again for their fantastic donation of £15,000 to support our project! More details are given on our latest newsletter which you can read here: http://us10.campaign-archive1.com/?u=438c2985e4a37f81f082c28e3&id=14ebca8107&e=418e03b635

***
IT'S TIME TO CURE CROHN'S!
 
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