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Crohn's Disease Forum » Books, Multimedia, Research & News » New Prof. Borody Anti-MAP research


11-13-2016, 11:16 PM   #1
irishgal
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New Prof. Borody Anti-MAP research

Prof. Thomas Borody's latest research from October 2016. He did a small study of AMAT in 8 treatment naive patients. All went into remission between 4-21 weeks. Also, the patients experienced deep mucosal healing. Full ACG poster link and his intro below:

http://thecrohnsinfection.org/prof-t...aive-patients/
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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.
11-14-2016, 06:08 AM   #2
Crohn2357
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The link is wrongly typed.
11-14-2016, 07:14 AM   #3
irishgal
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The link is wrongly typed.
This site seems to shorten links, not allowing them to work. I will try again, but if it still doesn't add the full link, you can go to TheCrohnsInfection.org and hit the What's New or Presenter Blog (All) sections and it should be there on top.

http://thecrohnsinfection.org/prof-t...aive-patients/
11-14-2016, 02:28 PM   #4
JMC
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It was tested on 8 patients who all responded well, but my question is, how many patients has it been tested on that did not respond well or got worse? I ask because I don't think anyone believes all cases we call Crohn's are MAP and would be interested to gauge the ratio.
11-14-2016, 03:23 PM   #5
my little penguin
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The other thing is how many people who had prior therapy did it work for or not work for ?
Does it only work if you haven't had any other therapy ?
Or only certain standard therapies ?
Or only certain time from Dx to trying map ?

As well does it only work on those with ulcerating /inflammatory disease or is it effective at healing/stopping disease progression in those with strcuring or fistulizing disease as well .


Lots of question but ...
Hopefully they can provide answers and get larger stufies
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11-15-2016, 08:11 AM   #6
xeridea
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This recent study discovered the mechanism by which mycobacterium bovis goes into a hibernating state when under stress. Just conjecture on my part, but maybe the treatment naive cases in Borody's latest research are instances where the MAP hasn't gone into hiding yet so it can be eradicated easier.
11-15-2016, 10:27 AM   #7
JMC
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This recent study discovered the mechanism by which mycobacterium bovis goes into a hibernating state when under stress. Just conjecture on my part, but maybe the treatment naive cases in Borody's latest research are instances where the MAP hasn't gone into hiding yet so it can be eradicated easier.
Yes, that would make sense if you consider this recent paper:
Increased viability but decreased culturability of Mycobacterium avium subsp. paratuberculosis in macrophages from inflammatory bowel disease patients under Infliximab treatment.

Last edited by JMC; 11-15-2016 at 03:44 PM.
11-15-2016, 10:14 PM   #8
irishgal
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JMC - not really sure how many treatment naive patients AMAT has been tested on, but an arm of the RedHill study is going to look at AMAT in that group, so I guess we'll see. From one interview Prof. Borody gave a couple of years back, he said he had an 80% remission rate with AMAT and a 100% remission rate in treatment naive patients. Maybe he had only tested these 8 at that point, so who knows what those stats would be now, but from the patients of his that I've talked to, they seem pretty pleased with their care.

Penguin - RedHill is doing the study that will answer your first question about the success rate of AMAT in patients who have had prior therapies. Dr. Chamberlin told me he has 50% remission, 70% improvement, and as above, Prof. Borody has 80% remission. All anecdotal unpublished stats, but hopefully we will begin to see some of the double blind, larger studies to figure this out.

In my case I had had just about all of the other traditional CD therapies and AMAT still worked amazingly to give me full healing. I've been fine for two years now. I think from what Prof. Borody says in his intro, any treatment that may have an effect on MAP could cause the persistant state, making it harder to eradicate in the future. John Aitken's research find different hMAP forms for treatment naive patients vs. long term patients. For example in my case, I had predominantly persistant forms that were dormant. These seem harder to kill. Treatment naive patients seem to have large forms and few persistors that are easier to kill. Which would make sense with this latest research. Also, not sure about which type of CD is works on best. One research per told me once that he thought that the presence of fistulas corroborated hMAP involvement, but I'm hoping with better diagnosics CD patients will eventually be routinely tested at their first onset/flare and if they have hMAP be treatted accordingly.

Xeridea - exactly. And the stress is treatments used in CD that have partial effectiveness against MAP or antibiotics used for something unrelated to CD. I've been told the persistant/dormant state is a bit harder to kill. They told me I will likely never be fully rid of it since it's had 25 years to gain a foothold. Who knows what will happen in the future though, but this type of research path is promising. The more groups that look at this, the more we'll know.
11-15-2016, 10:49 PM   #9
Mark in Seattle
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Irishgal, are you on Borody's anti-map treatment? Are you in Australia?
11-16-2016, 04:43 AM   #10
Crohn2357
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The results of this study are also very impressive:

Combining infliximab, anti-MAP and hyperbaric oxygen therapy for resistant fistulizing Crohn’s disease
11-16-2016, 08:12 AM   #11
irishgal
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Irishgal, are you on Borody's anti-map treatment? Are you in Australia?
No, I'm in the US with Dr. Chamberlin. I'm not on Borody's exact protocol since Dr. Chamberlin started me with 1000mg clarithromycin, 600mg rifampin and 500mg of levofloxacin, but the levo gave me so much trouble with my joints I dropped it at 6 months in. I'm currently on the other two and have added 4.5mg naltrexone when I dropped the levo.

However, if I'm still on this when RHB-104 gets approved, I may consider switching to a maintenance dose of that instead. The most recent studies about the combined effectiveness with a lower MIC are encouraging. I guess we'll see how my case goes, but so far I feel great after 2 years.
11-16-2016, 08:14 AM   #12
irishgal
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This is a great study as well. I'd love to see more research studies in a larger population with combos using AMAT.
11-16-2016, 12:38 PM   #13
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It would also be interesting to see what constitutes treatment naive. I've been on mesalazine and budesonide for nearly a year but nothing else and would be interested if that would count.

EDIT: Nevermind, read and saw that this includes those with any steroid or mesalazine treatment, which would de facto include anyone at all who has been diagnosed with crohns. Depressing to think we could have missed out on the only avenue to actually be rid of the disease. Though i am skeptical of the constant "8 people studies" the MAP division churn out whilst been hesistant and obscure about larger professional studies.

Last edited by Anonymous77; 11-16-2016 at 12:56 PM.
11-16-2016, 08:55 PM   #14
irishgal
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Anon - I know it's frustrating to me to see such small studies and wish we could test this on 300 people instead, but those studies cost millions. RedHill was able to do the large study because they have a patented pill that will cover the cost of the study if it works, but otherwise AMAT is just cheap, generic antibiotics. It works, but it's not lucrative. Companies don't want to fund that type of research, so you see these humanitarian docs doing small studies that are more affordable.

The hope is that eventually there will be enough evidence to withstand even the most ardent critics, and then the treatment will shift away from pricey immunosuppressants. If RedHill shows positive results, AMAT will be used as a first line treatment and future generations won't become resistant without knowing it. A lot needs to happen before that though. I guess we'll see when the research comes out! More groups are starting to look at this.
11-21-2016, 07:33 PM   #15
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very interesting thanks!
are there any data on the safety of long term antibiotics therapy?
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11-21-2016, 08:16 PM   #16
irishgal
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Lots of long term safety data with a variety of antibiotics used in AMAT. Not necessarily in Crohn's, but other diseases. They've been around for decades. Some are used long term in TB or leprosy. Here's one study about clarithromycin used safely for four years:

http://www.sciencedirect.com/science...54611103000428

Just search around and you'll find studies discussing the specific antibiotics you want to research.
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