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Crohn's Disease Forum » Books, Multimedia, Research & News » Crohn's Research Symposium in Chicago August 16th


 
10-11-2015, 03:28 PM   #31
JMC
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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/
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.
10-11-2015, 05:16 PM   #32
xmdmom
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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.
10-15-2015, 05:37 PM   #33
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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.
12-06-2015, 02:47 PM   #34
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New post by John Aitken: Victory
http://thecrohnsinfection.org/presenter-blog/
__________________
Currently on: Anti-MAP therapy and loving life! Full remission since Jan 2015. Clarithromycin, rifampin and low dose naltrexone. (Levofloxicin had too many side effects so discontinued after 5 months.) Resources on human MAP and Crohn's here: HumanPara.org.

Past (failed) Treatments: Remicade, Humira, Prednisone, Pentasa, Azulfadine, Lialda, No gluten/dairy/sugar/coffee or processed food in general. Flagyl worked but not long term.
12-07-2015, 04:05 PM   #35
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Interesting. I look forward to this being published in a refereed journal so we can all properly understand where this research is going.
12-07-2015, 07:01 PM   #36
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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.
04-23-2016, 07:34 PM   #37
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We just received a series of video clips from the documentary crew Majestic Plural Studios, who conducted interviews just prior to the Chicago symposium last year. Each of the 5 presenters (John Aitken, Patrick McLean, Dr. William Chamberlin, Dr. Amy Hermon-Taylor and Dr. Michael Collins) have a short video if you are interested in watching:

http://thecrohnsinfection.org/majest...entary-shorts/
09-19-2016, 01:18 PM   #38
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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?
09-19-2016, 02:03 PM   #39
xeridea
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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?
We touched on this topic in this thread, messages #473 & #474.
09-19-2016, 07:39 PM   #40
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For how long will you continue to take antibiotics, irishgal?
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.
09-20-2016, 09:37 AM   #41
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Irishgal, what antibiotics are your currently taking?
09-20-2016, 05:52 PM   #42
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Irishgal, what antibiotics are your currently taking?
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!
09-22-2016, 12:00 PM   #43
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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.
09-23-2016, 05:51 AM   #44
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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.
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.
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