Crohn's Research Symposium in Chicago August 16th

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irishgal

irishgal

Joined
May 21, 2015
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Hi All,

Wanted to let you know about a Crohn's research symposium/conference happening in Chicago in August. The official title is Internation Research Symposium: Game Changing Concepts in Crohn's Medicine. I know some of you have an interest in treating Crohn's disease as an infection, and that's basically what these presenters will discuss. Presenters include:

Dr. William Chamberlin - US GI
John Aitken from New Zealand
Dr. Amy Hermon-Taylor (daughter of John Hermon-Taylor)
Patrick McLean from Redhill
Dr. Michael Collins - Vet who links Johne's disease with Crohn's.

I'm excited to hear all of these speakers together! While MAP will certainly be part of this (and I know it can be a controversial issue) there are other components that will be discussed. I'm sure Patrick's discussion of how the Redhill study is going would be interesting, and Dr. Chamberlin has a new innate immune modulator called FepiBro that he's seeking FDA approval for trials.

John Aitken's research is interesting because he's discovered intracellular Mycobacteria "Red Spots" in Crohn's patients, and he's currently working to find out their importance. He calls them Red Spots because they stain red under Ziehl-Neelsen staining, and has recently renamed them "Wherocytes" since the New Zealand Maori word for red is Whero. They're not conclusively MAP, but it's either that or something closely related. Either way, they could play a role in Crohn's, which John will discuss at the symposium.

There's a website with all the info, but I don't want to break forum rules and post it. I'm sure you can find it if you're interested! The coolest thing (imo) is that there is a Presenter Blog section, with new articles on various Crohn's related topics from the presenters themselves. There's also a patient stories section.

For full disclosure, I have no financial interest in any of this. I have Crohn's and Dr. Chamberlin helped me when I was very sick. I am in full remission due to the anti-MAP therapy. I'm assisting with aspects of the symposium because I think it's a great learning opportunity. I know this isn't for everyone, but for those interested, I wanted to spread the word. I figure that no single Crohn's treatment will work for everyone, so why not support lots of different treatments in the hopes that everyone can find something! I wish all my fellow Crohnies good health and happiness. :rosette1:
 
I forgot to mention, I know most of you won't be able to make it to Chicago to attend the symposium live (although there is a Meet and Greet with the presenters if you can come!) Instead, you can attend via a video replay of the presentation that you can watch once it's over. All details on the site. :dusty:
 
irishgal said:
There's a website with all the info, but I don't want to break forum rules and post it.
Click to expand...

I don't understand, which forum rules would that break? This is the research section, posting information about valid Crohn's research cannot be breaking any rules,
 
Hi JMC - not exactly sure since I'm new, but I ran it by a moderator first and provided the website link, and they told me I couldn't post it. There is an option to buy a ticket to the symposium (which is super cheap) and one place gives contact info for people who would like to donate to the research, so maybe that's the problem?

The primary purpose of the symposium is to educate people on new Crohn's research (focused around bacertial triggers/MAP) and allow accessibility to the presenters for the average patient. As I've gotten to know these presenters through my own treatment and then assisting where I can on the symposium, I've found them all to be such humanitarians. Less concerned about money/fame than truly helping people get well, probably to their detriment. They're great people as well as intelligent, expert researchers.

I'm sure if you search for "Wherocytes" you'll find it!
 
Yes! I can't wait. John Aitken told me he's got something new to share with the world there. I think it's big! looking forward to meeting these docs who have helped me so much. How about you? There's a video replay for those who can't attend in person.
 
irishgal said:
Yes! I can't wait. John Aitken told me he's got something new to share with the world there. I think it's big! looking forward to meeting these docs who have helped me so much. How about you? There's a video replay for those who can't attend in person.
Click to expand...

It would be great if all of the talks were recorded and put on Youtube. I have shared a few Youtube videos with my gastroenterologist, it is a great way to spread news about ground breaking ideas.
 
JMC - there will be some type of video replay of the entire thing, probably through their symposium site. It may end up utilizing YouTube, but just not sure at this point. The good news is, if you want to show your GI, you can!!
 
Only a couple of weeks left before the big symposium! Anyone planning to attend, especially those with kids who have Crohn's. There may be an opportunity for parents of kids with Crohn's to meet separately. PM me if you're interested! Wish I lived in the Chicago area, but it may be a nice break away.
 
Hi perfectjelly - the videos should be up very soon! We're working with the videographer to get them, and he told us he mailed them to us via snail mail last Wed, so I'm hoping they should be to my box in about an hour. Was so disappointed they didn't come on Saturday. Just as excited as you are to show them to the world! It's raw footage, so we have to do a few quick edits and then will start popping them up. Some will need more editing than others since there were some technical difficulties and resulting down time. We'll try to edit as little as possible to give viewers the same experience the attendees had. They'll be on TheCrohnsInfection.org as soon as we get them! I will also post on this forum since I know others are interested.
 
This is great. Im really interested to learn about ways to treat Crohn's. I understand medication is required but I would like to look at more natural remedies or if they exist. How they can compliment?
Thanks for sharing a great resource. Will be keen to watch the videos.
 
Hi justasgood - I also tried a bunch of the natural remedies before I did AMAT, since I wanted to give diet and lifestyle changes a good try. Most of it helped, like yoga, no gluten/dairy/sugar, but nothing really fixed my Crohn's. Luckily, it got me used to a cleaner way of living before AMAT, so when I went on the antibiotics and got better, my body absorbed all of the supplements and healthy food which I believe partially led to my speedy recovery. It's just a guess though. It could have been that I was on Remicade just prior to AMAT, which is known to push MAP into a dormant state.

Currently I take Vit D, Omega 3, a few different strains of probiotics like VSL3, iron, zinc, Vit C, Reishi mushrooms, and bromelain with the Rifampin to increase absorbtion. Plus, I eat lots of fruits and veggies and don't drink milk. Yoga helped a lot, and I need to get back to that! Beet of luck with finding a therapy that works for you!
 
Thanks, is there a basis for cutting out gluten, dairy and sugar? I only have a meter and a half of small intestine left so bar I get an obstruction no food seems to really cause a reaction. For me stress is the major trigger. (Yoga sounds like an idea) I`m wondering where the advice to cut out food groups comes in the Crohn's treatment?
 
Yikes - a meter and a half! I've lost 18 inches so far, but the rest is there. I can only imagine how challenging that must be to get proper nutrition. My basis for cutting out some of those items was that since I have had Crohn's for 25 years, my intestine was so damaged that it was leaking, as in leaky gut syndrome. By cutting out aggravating protiens that were leaking out, it caused less inflammation and I felt better. Then, once AMAT healed all that tissue, things stopped leaking and I can tolerate more foods without having an adverse reaction. Weirdly during that period, I was VERY sensitive to scent as well. I don't know if it was related and I still am sensitive, but I can sit in an auditorium without feeling like I'm being smothered by perfume. I think my body was just so broken and overloaded with disease for so long, that I was reacting to stuff all over the place. Plus, I had stripped out any artificial fraggrance from my home prior, and that hightened my sense of smell. I've heard other patients say that've had issues with scent like I did, and it's gotten better as my Crohn's got better.

Hope any of this helps! I'm not a doc, so can only tell you my personal experience. Vinyasa flow yoga did wonders. Stress is a trigger for me as well, and the flows plus the meditation at the end made me feel wonderful. I really need to do it 4-5 times a week.
 
That's where Im lucky. I had a total colectomy in 1994 and didn't really take much medication. I think my intestine has completely adapted itself to its situation. My small intestine then had lots of perforations and Crohn's and resections and obstructions. As a result anyway, I actually don't find food a trigger at all; either its not in their enough to create an issue or my intestine has learned to deal with it. (I have an permanent ileostomy now and pay no attention to output). The Vit D and omega I get for osteoporosis etc. I cant eat vegetables as I cant break them down so Im pretty carb heavy and maybe I get enough energy from that.

Im beginning to wonder if maybe none of the diet side really applies to my case. I have Crohn's for 21 years now. I get iron infusions once a year though despite being a red meat eater!

The variety of cases here is fascinating. I`d like to know what causes it. Do you have family with the same condition?
 
Glad you have found a system that works for you! I have a lot of relatives with other "autoimmune" diseases and a few with IBD. I think mine is faulty genetics plus exposure to MAP. For most Crohn's patients, I think MAP is the cause, especially after the info presented at the symposium.
 
The first video of Dr. William Chamberlin's 25 minute Intro is up!

http://thecrohnsinfection.org/symposium-information/

There are many more to come, but because we got raw footage, there is come format conversion and editing that needs to be done. Eventually we'll have transcripts for those who would rather read than watch. We're working on getting these up as fast as possible, so check back for more. The videos are free by request of the presenters.
 
Second video is up at TheCrohnsInfection.org. It's Dr. Michael Collins' talk about MAP being a zoonosis.
 
irishgal said:
Amy's diagnostic talk is now available for viewing. Feel free to share on social media as well! Very interesting research that could help docs quickly get a MAP diagnosis for treatment purposes.

http://thecrohnsinfection.org/symposium-information/
Click to expand...

Thanks for posting. I now have an idea of how Prof. Hermon-Taylor's test works.

From what I understand about the test, they have developed a monoclonal anitbody that is very specific for some antigens expressed by proteins on the surface of MAP cells. They have also developed a second antibody that has a luminescent tag, and which binds to the first antibody that has attached to the MAP bacteria. Then they run the sample through an immmunofluourescence microscope, and can see the infected cells because they are lit up like a Christmas tree.

I was particularly intrigued by Dr. Amy Hermon-Taylor's statement that they have used the test on the tissue of 70 CD patients, and 100% of them showed a MAP infection, and furthermore, that there is a correlation between the luminance of the cells that light up and disease severity. And related, how they looked at one patient's tissue before and after a 3-month anti-MAP therapy round. Even though the MAP wasn't eradicated, there was a marked reduction of MAP presence in the cells, and a commensurate improvement of symptoms.
 
xeridea said:
I was particularly intrigued by Dr. Amy Hermon-Taylor's statement that they have used the test on the tissue of 70 CD patients, and 100% of them showed a MAP infection, and furthermore, that there is a correlation between the luminance of the cells that light up and disease severity.
Click to expand...

My resection samples were tested and I had "patchy" MAP infection. I know of others who were tested who had much greater levels of infection and are generally more unwell, so there does appear to be a reasonably good correlation.
 
JMC said:
My resection samples were tested and I had "patchy" MAP infection. I know of others who were tested who had much greater levels of infection and are generally more unwell, so there does appear to be a reasonably good correlation.
Click to expand...

So this becomes an interesting topic. Dr. Amy said that many in the general population also carry MAP. I wonder how they will then define "testing positive". Someone may have MAP yet not have Crohn's. Someone else may have the same "level" of MAP and present with Crohn's. Curious how you will then measure "infection".
 
xeridea said:
So this becomes an interesting topic. Dr. Amy said that many in the general population also carry MAP. I wonder how they will then define "testing positive". Someone may have MAP yet not have Crohn's. Someone else may have the same "level" of MAP and present with Crohn's. Curious how you will then measure "infection".
Click to expand...

Is this really any different to tuberculosis where lots of people are asymptomatic, yet infected mycobacterium tuberculosis?
 
xeridea said:
I wonder how they will then define "testing positive". Someone may have MAP yet not have Crohn's. Someone else may have the same "level" of MAP and present with Crohn's. Curious how you will then measure "infection".
Click to expand...

This would be an amazing test if it could have some predictive indication of very early Crohn's disease. The established theory says that people can have Crohn's for years before they have a first flare. Wouldn't it be great if we could ward it off prior to that first flare with a combo of this test and genetic testing for a susceptible population! Sorry, getting way too excited. I'm just thinking about all of the pediatric cases this could help. I know this needs a lot more testing, but very exciting and promising stuff.

JMC - how cool that you were tested via this method! I know Amy was so sorry she couldn't show us all the human pics of samples like yours. I a few years with all of this research coming from different MAP camps, I don't think there will be any way to plausibly deny that MAP has some role in Crohn's and it needs to be taken seriously.
 
My GI once said that H. Pylori may be prevalent in up to about 70% of the world population. But it's quiescent in most of that population. Similarly, it's estimated that about 30% of the world is infected with tuberculosis, another mycobacteria from same family as MAP. But these latent cases don't exhibit the symptoms of the disease and their immune system is keeping the bacteria in check. If MAP is as pervasive in our environment as we're being led to believe, then it might be that there is a sizable portion of the population is infected with MAP yet doesn't have Crohn's.

Anti-MAP Therapy can't be that selective and target only MAP. Maybe it's killing off a bunch of other bacteria too. How do we know that one of these other guys isn't the culprit?

I don't want to be skeptical, and at the same time, I don't want to bury my head in the sand either. I just have too many questions.

Sort of just have to bide my time and wait until some of the trials release data and go from there.
 
Bonus footage from the Chicago Crohn's MAP symposium! At the last minute, world renown gastroenterologist Dr. David Rubin, from the University of Chicago Medical Center, gave a presentation. He talks about MAP, the microbiome, how he got started as a GI and what he sees for the future of IBD. Lots of great info!

http://thecrohnsinfection.org/symposium-information/
 
irishgal said:
Bonus footage from the Chicago Crohn's MAP symposium! At the last minute, world renown gastroenterologist Dr. David Rubin, from the University of Chicago Medical Center, gave a presentation. He talks about MAP, the microbiome, how he got started as a GI and what he sees for the future of IBD. Lots of great info!

http://thecrohnsinfection.org/symposium-information/
Click to expand...

It was an interesting talk and I learnt one key thing: in Crohn's the patient's microbiome is unstable. This perfectly explains why I can eat the same diet for days and some days will be really well and others feel terrible and often if I travel to another country within a day or two I will get a very upset stomach and occasionally have been very unwell.

This also explains why diet can change how you are feeling, sometimes making you feel better, but given the important factor is what you cannot see i.e. the bacteria you are ingesting or growing inside, it is very hard to choose a diet that guarantees you will feel better.
 
At 24 minutes, he discussed ileal inflammation without blood markers of inflammation.
He said 20% of the population doesn't make CRP. He also said that ESR is notoriously insensitive.
 
This paper is regarding a possible TB vaccine targeting Mycobacterium Tuberculosis, a close cousin of MAP. It describes a lot of the machinery of how the vaccine works, and a lot of what it describes probably parallels how the MAP vaccine will work. It's a bit heavy reading but good if you like to get into the nitty-gritty of this sort of stuff.
 
Yes, me too! From what he says, they're still discovering so much. It seems to be changing rapidly, but it's encouraging that it's "the end of the beginning." It's interesting to read all of John's blogs chronologically as a set. It gives a bigger picture. I can tell you there's another one in the works, and I have more Dr. Chamberlin FAQ answers to finalize and post. I'm encouraged that this research seems to be picking up speed.
 
I'm not sure if I'm posting this question in the right place, but I was just wondering if it is possible that AMAT treatment works because the antibiotics have an anti-inflammatory effect and not because its killing MAP?
For how long will you continue to take antibiotics, irishgal?
 
Julia S said:
I'm not sure if I'm posting this question in the right place, but I was just wondering if it is possible that AMAT treatment works because the antibiotics have an anti-inflammatory effect and not because its killing MAP?
For how long will you continue to take antibiotics, irishgal?
Click to expand...

We touched on this topic in this thread, messages #473 & #474.
 
Julia S said:
For how long will you continue to take antibiotics, irishgal?
Click to expand...

Julia - my plan now is to stay on AMAT for as long as I can tolerate it without significant side effects. None of the traditional treatments have worked for me, so unless they can come up with something that's not an immunosuppressant, I'm staying on AMAT. In the future, I'd love to either stop them or switch to something with less risk. Maybe Dietzia, if that is trialled and approved, or SSI, FMT? Not sure what the future will hold, but I'm healed now, and I want to stay that way, so I will keep taking my meds unless there's something better. I think we'll know a lot more in 5 years, so will try to hang on and stay well until then.
 
Julia S said:
Irishgal, what antibiotics are your currently taking?
Click to expand...

I'm on clarithromycin and rifampin, plus low dose naltrexone. I had too many side effects from levofloxacin, so dropped that 6 months in. I have many times though about adding clofazimine to try to combat resistance and achieve long term remission or something approaching a cure (since the research says three antibiotics are ideal) but I'm doing so well that I don't want to mess with anything. The docs agree, so I'm crossing my fingers this works for a very long time!
 
irishgal, would you please share the dosage and how many times do you take these antibiotics in a day? Would you also share the side effects you've experienced so far? I can't remember when, and what was the actual content; but I remember reading that long term clarithromycin may cause serious problems.
Thank you a lot.

It's very good that you're in remission. I hope it lasts forever.
 
Crohn2357 said:
irishgal, would you please share the dosage and how many times do you take these antibiotics in a day? Would you also share the side effects you've experienced so far? I can't remember when, and what was the actual content; but I remember reading that long term clarithromycin may cause serious problems.
Thank you a lot.

It's very good that you're in remission. I hope it lasts forever.
Click to expand...

I am currently taking:

Clarithromycin: 500mg twice a day
Rifampin: 300mg twice a day
Naltrexone: 4.5mg once a day

Now I don't have any side effects except I get slight nausea from the antibiotics every once in a while. At the beginning, I started full strength day 1 and had the typical Herx die off reaction. I felt like I had the flu for about two weeks and had pretty severe nausea for a few days while my body adjusted. That slowly subsided and I got better little by little. Also, I was initially on 500mg Levofloxacin as well, but around 6 months in it made my knees and wrists/hands ache and tingle so badly that I had to stop it.

I don't believe I've seen a study about long term clarithromycin. I'd be interested if you could post it. I'm on just about the same dosage as what is being trialled in the RedHill study, and I know every treatment has it's risk factors. But uncontrolled Crohn's and inflammation is also risky, and I feel a lot better this way than before AMAT. The key with AMAT is to take it for long enough so that the hMAP doesn't have a chance to reactivate. Kind of like in TB, but in some ways harder to kill, but less virulent. :rosette1:
 

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