The Consensus from the Mycobacterium avium ssp. paratuberculosis (MAP) Conference 2017

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Canada Mark
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   Posted 9/27/2017 7:06 PM (GMT -7)   
Was just released. For any interested: /www.frontiersin.org/articles/10.3389/fpubh.2017.00208/full?utm_source=F-NTF&utm_medium=EMLX&utm_campaign=PRD_FEOPS_20170000_ARTICLE

"On March 24 and 25, 2017 researchers and clinicians from around the world met at Temple University in Philadelphia to discuss the current knowledge of Mycobacterium avium ssp. paratuberculosis (MAP) and its relationship to human disease. The conference was held because of shared concern that MAP is a zoonotic bacterium that poses a threat not only to animal health but also human health. In order to further study this problem, the conferees discussed ways to improve MAP diagnostic tests and discussed potential future anti-MAP clinical trials. The conference proceedings may be viewed on the www.Humanpara.org website. A summary of the salient work in this field is followed by recommendations from a majority of the conferees."


*** - Something neat, a board member (not to active lately) on here is actually listed as one of the authors as he was able to attend, which is kinda cool. ***

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Old Mike

I was just wondering if you have any thoughts on: gallium nitrate and monensin sodium. Seemed up your alley. They say in the paper it has ben used for Johne's Disease treatment.

Old Mike
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Date Joined Jan 2007
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   Posted 9/28/2017 4:35 AM (GMT -7)   
Never looked at monensin it is usually used to kill protozoa infection.
Looked at gallium years ago. But here is a patent on its use for IBD.
At this point, if it really did work,it is so cheap I don't think it will ever hit mainstream.
Too much money being made on biologics.

For my next experiment going to try and drive down this cytokine of which I never heard of before.
Oncostatin M seems like it might be really important.

In this issue, West et al.6 first identified OSM as the most transcriptionally upregulated cytokine in inflamed intestinal mucosa from patients with CD and as among the most upregulated in patients with UC, when compared to mucosa from healthy individual.

See my current thread on OSM for more info.

What also drives me nuts is that many of the natural treatments are supposed to be antiinflammatory.
But if you run a search on say fish oil immune stimulation, guess what it stimulates, as does garlic,melatonin
and I guess many others. I suppose these compounds can have dual function depending on what is going on.

Old Mike
here is a patent gallium use in IBD
/www.google.com/patents/US20110021484

Post Edited (Old Mike) : 9/28/2017 5:52:23 AM (GMT-6)


iPoop
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Date Joined Aug 2012
Total Posts : 10991
   Posted 9/28/2017 6:09 AM (GMT -7)   
Canada Mark said...

*** - Something neat, a board member (not to active lately) on here is actually listed as one of the authors as he was able to attend, which is kinda cool. **
Oh really? Neat! What's the poster's healingwell username? Just curious...
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Taking the "oo" out of poo.

Canada Mark
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Date Joined Jan 2013
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   Posted 9/28/2017 4:11 PM (GMT -7)   
I forget his username - ummm... I think it may be marauder. He was able to attend the conference and speak with all the researchers etc as he is in school for this stuff. Awesome for him.

iPoop
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Date Joined Aug 2012
Total Posts : 10991
   Posted 9/28/2017 5:42 PM (GMT -7)   
Ah i remember that poster, thanks! Pretty cool to get recognized!

Canada Mark
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Date Joined Jan 2013
Total Posts : 3481
   Posted 9/28/2017 8:50 PM (GMT -7)   
@ iPoop - Here is a recent article on him from the University he is attending.

/news.westernu.ca/2017/09/experience-champions-quest-understanding/

Might be worth making a post outside of this thread on him. It's nice to see and read about the path he followed. Especially being a board member on here. It's a difficult task to juggle IBD and med school.

I find it inspiring.
Diagnosed Crohns-Colitis 12-13 years ago - Past Meds: Antibiotics, Prednisone, Methotrexate, Imuran, Remicade - Current Meds: Imuran 150mg/daily, Natural: WOO/Thyme Oil, All organic food no additives as best as possible. I stopped taking probiotics as I felt they were not helping much.

“The only person you're destined to become, is the person you decide to be"

Connor77
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Date Joined Jul 2016
Total Posts : 362
   Posted 10/2/2017 3:48 PM (GMT -7)   
Otakaro Lab in New Zealand just got back to me very recently to inform me they discovered MAP in my blood, so I will be starting the AMAT protocol shortly. I am very excited. I have had 5 high level stool tests in the past month and I'm clear for all standard infections, so MAP is the likely reason for my IBD.

Very cool that they're having a conference about it. Now that accurate testing methods are appearing there's hope that we can finally cure this disease.

IamCurious
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Date Joined Jan 2010
Total Posts : 3072
   Posted 10/2/2017 5:06 PM (GMT -7)   
they discovered MAP in my blood, so I will be starting the AMAT protocol shortly.

Good luck Conner!

U B Tough
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Date Joined Aug 2015
Total Posts : 894
   Posted 10/3/2017 7:17 AM (GMT -7)   
I too tested positive. What protocol will you be using Connor?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Uniform Charlie
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Date Joined Jul 2015
Total Posts : 514
   Posted 10/3/2017 7:50 AM (GMT -7)   
Connor, what is your official diagnosis? Crohn's or UC? I forget.

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 362
   Posted 10/3/2017 8:34 AM (GMT -7)   
My official diagnosis is UC, but unofficially I'm dealing with patchy Crohn's-Colitis. Doesn't really matter either way, inflammation is inflammation and both are caused by MAP.

U B Tough, I would like to do clarithromycin, rifabutin and clofazimine, but it's next to impossible to get clofaz in Canada because the Canadian government is blocking it except for leprosy treatment. Ten years ago you could get it, now you can't and they expect you to use newer, crappy alternatives. It's the usual corruption of the pharmaceutical industry. So I am trying to find a source to get my hands on it.

U B Tough
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Date Joined Aug 2015
Total Posts : 894
   Posted 10/3/2017 9:32 AM (GMT -7)   
Hmm. I didn't know that about clofazimine. Have you tired Mt Sinai in Toronto? They are doing a MAP trial now. Dr. Mark Silverberg.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

xy123
Veteran Member


Date Joined Feb 2014
Total Posts : 675
   Posted 10/5/2017 5:11 AM (GMT -7)   
U B Tough, since you are MAP positive, have you ever considered using the Anti-MAP therapy?

Were you also tested by the Otakaro Pathways?

MarjieKay
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Date Joined Jun 2017
Total Posts : 611
   Posted 10/5/2017 5:47 AM (GMT -7)   
Connor77 said...
Otakaro Lab in New Zealand just got back to me very recently to inform me they discovered MAP in my blood, so I will be starting the AMAT protocol shortly.


This is an exciting turn of events and I'll be following your progress, Connor77 !

I have been reading a lot of the Facebook MAP group and this theory really seems credible top me. At least for a section of IBD'ers anyway. I hope this is it for you turn
F, 51
2008 proctitis, 2016 chronic UC rectum/sigmoid, 2017 quiescent UC
Current pharms: Pentasa 3g day, mesalamine enema (Tapering-1 x per wk now)
Anti-inflammatory diet :IBD-AID from U of Mass

Extras:
Advanced gut health probiotics, Primadophilis Reuteri, water & milk kefir
Digestive enzymes (big protein meals only now), Psyllium seed powder, Ginger Tea
Vitamins D, C & K, fish oil, cal/mag

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 894
   Posted 10/5/2017 7:22 AM (GMT -7)   
xy123 said...
U B Tough, since you are MAP positive, have you ever considered using the Anti-MAP therapy?

Were you also tested by the Otakaro Pathways?


Yes and yes. Also tested positive with John Aikten in New Zealand.

My situation is very complicated as I react with serious d with any abx (exception of 1). We are trying Stelara first and failing that it will be the anti-MAP. I'm very apprehensive of trying it.

xy123
Veteran Member


Date Joined Feb 2014
Total Posts : 675
   Posted 10/5/2017 10:43 AM (GMT -7)   
I see. I hope you achieve remission one way or another without any serious side effects.

What did your GI doctor say about your positive test result? Does he agree on using the anti-map antibiotic cocktail if Stelara fails?

MarjieKay
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Date Joined Jun 2017
Total Posts : 611
   Posted 10/7/2017 9:06 AM (GMT -7)   
I thought of you when I saw this today Connor.....I hope this helps YOU too ! an entire year early is wonderful smile

"RedHill Biopharma announced it has reduced the number of participants it will enroll in its phase 3 trial of RHB-104, an oral antibiotic for Crohn’s disease, and now expects results a year early."

https://www.healio.com/gastroenterology/inflammatory-bowel-disease/news/online/%7B6a9df261-0e7c-41b3-ab92-6983200e1adc%7D/crohns-map-antibiotic-trial-results-expected-early
F, 51
2008 proctitis, 2016 chronic UC rectum/sigmoid, 2017 quiescent UC
Current pharms: Pentasa 3g day, mesalamine enema (Tapering-1 x per wk now)
Anti-inflammatory diet :IBD-AID from U of Mass

Extras:
Advanced gut health probiotics, Primadophilis Reuteri, water & milk kefir
Digestive enzymes (big protein meals only now), Psyllium seed powder, Ginger Tea
Vitamins D, C & K, fish oil, cal/mag
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