A MUST WATCH INTERVIEW

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chocolate_stains
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Date Joined Dec 2008
Total Posts : 61
   Posted Yesterday 8:31 AM (GMT -7)   
A an absolutely must watch one on one interview with Professor Borody regarding MAP and Crohn's, and fecal transplants.

http://www.youtube.com/profile?user=IBDvideos&view=playlists Simply select "Play All"



Regards,
David

Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted Yesterday 8:50 AM (GMT -7)   
Wow all I need now is a degree in micobiology. Thanks chocolate, looks like we are still a ways from an answer though.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


hana24
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Date Joined Dec 2007
Total Posts : 354
   Posted Yesterday 9:14 AM (GMT -7)   
Thanks - this is interesting
Jessica 27/F
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Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)


chocolate_stains
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Date Joined Dec 2008
Total Posts : 61
   Posted Yesterday 10:11 AM (GMT -7)   
Hi Sniper,

The Professor Borody interview is layman's. I conducted it with him this August, and I am a legal studies student. There is a good section where we talk to one of Professor Borody's patients who has been on the anti-MAP treatment for 12 years.

DocGonzo
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Date Joined Dec 2006
Total Posts : 151
   Posted Yesterday 8:46 PM (GMT -7)   
Brilliant, thanks a lot David! I can honestly say prof. Borody is one of my heroes. It's great to hear him speak about this very important topic, and it's great to see one of his actual patients doing so well. I agree wholeheartedly - seeing is believing, and once more doctors start trying out this therapy and seeing great results the Sydney clinic has been having for years and years, treatment paradigms will have to shift. It just saddens me to no end that so many will have to suffer so much in the meantime because they just don't know and currently have no way of knowing about this. Still, there is light at the end of the tunnel and maybe, just maybe in 10 years Crohn's will be as simple to treat and eradicate as H. Pylori gastritis. Until then, I urge everyone to read up on anti-MAP therapy and the brilliant work being done by prof. Borody and his team, it's really inspiring stuff.

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted Yesterday 9:26 PM (GMT -7)   
Thank you for posting this, chocolate! I will definitely watch little by little as I have a chance. Is that you in the interview with Borody? Thanks again!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted Today 9:02 AM (GMT -7)   
Yeah DocGonzo, he is a GREAT.

EMom, yeah that is me conducting the interview. I have Crohn's, diagnosed when I was fifteen after a year of having a perianal fistula for a year - unbelievable medical treatment, the doctor that was monitoring me should have had their license revoked - all you have to do is google perianal fistula and IBD will come up. Time and time again my mom would ask her if I could have IBD and she would say no, and this is even after operating on the fistula. But I digress. I will have been following Dr. Borody's protocol for three years this coming February. I had tested positive for MAP on serum PCR and serum ELISA before starting treatment. I have experienced no side effects except the initial ones at the start and now the brownish-redish tan of the skin. Unfortunately, however, it has not been the magic bullet for me. There are a couple potential explanations: one, I might have a co-Colitis (I went to Dr. Borody this summer to have a fecal transplant because of the idea that I might have UC as well but did not go through with the fecal transplant then because I was in remission and did not want to stop the anti-MAP to do the fecal transplant); two, a resistant strain of MAP may have developed (we need MAP specific antibiotics); three, my genetics that predisposed me to a MAP infection and immune response in the first place maybe making it difficult to eradicate the MAP infection; or four, I may not have the type of Crohn's that will respond really well to anti-MAP, something I ask him about in the interview -"Do we know yet which types of crohn's (ileal, crohn's-colitis, granulomatous, left-sided etc.?" - will respond to anti-MAP, to which he responded that at this point it is too early to tell for sure. Since on the treatment I have had two small flares during the past two falls. I can only speculate as to why the flares occurred: one, because of the reasons just listed above; two, because of stress (LSAT and school); three, stopped Pentasa both times in August because of my Creatinine clearance being elevated (and Pentasa has been shown by Dr. Greenstein in NY and Collins in Wisconsin to be anti-MAP); or four, because of diet going way overboard on sugar - likely a combination of all of the above. That said, despite the small flares in which my blood work has remained normal but bowel has had bleeding (although nothing like a severe flare), the anti-MAP treatment has been the best for me so far.

As a practical way to approach the question of whether or not someone should try anti-MAP or you have your son try it, go through all the conventional therapies up until the point that you do not feel comfortable with given the side effects like lymphoma and brain eating viruses, and if they ever start talking about surgery, try the anti-MAP then. I am sure others who have had perfect success on the treatment would say just try it right now and don't wait, and they may be right but this is just my practical personal advice. Practical because it will be a challenge to find a doctor who will prescribe the treatment. Although I had tested positive for MAP on blood tests, if you test negative that should not necessarily be a reason not to do the anti-MAP because right now we don't have perfect tests so there are likely many false negatives; it is just that a positive test is a nice thing to have when trying to convince your doctor to prescribe; gives them something to hang their hat on when prescribing off-label.

When the Myoconda trial is done in Europe they will start in the US and Canada. They already have permission in the US by the FDA to run the trial, but it was just too prohibitively expensive at this point to start in the US, so Europe was first.

David

Post Edited (chocolate_stains) : 1/24/2011 10:21:06 AM (GMT-7)


chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted Today 9:07 PM (GMT -7)   
http://www.physorg.com/news147973325.html

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 12/10/2008 8:20 AM (GMT -7)   
David, that's all quite fascinating! Thanks for the insight into what you've been doing! And yes, it sure sounds like your doctor when you were first diagnosed SHOULD have her license revoked!!! mad

Over the last year and a half since my son's diagnosis I have been in email contact with 4 or 5 people who have undergone Anti-MAP treatment here in the US. I also contacted a doctor who will treat using Anti-MAP. After a very long discussion with him on the phone, he recommended we not go forward with it because my son already seemed to be in remission at the time. That was over a year ago now and my son continues to be very well and is on no meds, though follows the SCD. That doctor expressed similarly what I think you seem to be saying; this should be a last ditch effort after everything else has failed.

My son's doctors do believe he is in remission (whatever that is when it's infectious...)... Recently one of his GIs told me he believes IF we can keep him healthy and avoid damage through his college years that often times it will "fade away" in a person's late twenties/early thirties... confused This concept surprised me, but this particular doctor wholeheartedly believes this is an infectious disease and given optimal circumstances, the body can eradicate it on its own. As an aside, this doctor would not speculate as to what he believes the pathogen is.

Thanks again for your insights and efforts on this! I am always anxious to learn what Borody and others are doing to get at the root cause of Crohn's.
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 12/10/2008 10:38 AM (GMT -7)   
Did Dr. Borody mention anything about Prof JHT's anti-MAP vaccine?

chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted 12/10/2008 1:07 PM (GMT -7)   
I hope your son continues to do well EMom. Probably some of the best advice to him when going off the college is to try to still eat well, sleep lots and not party, and if possible don't get stressed out at school which is easier said than done. I would not say a complete last ditch effort though. I personally will not try the biologics, so personally I'd say go for the antibiotics before the heavy duty stuff that only produces remission in 20% of patients after one year anyways.

He mentioned it quickly when I asked him about what areas forward we need to focus on. He said we need better diagnostics, better (MAP-specific) antibiotics, and that we must not lose sight of trying to immune stimulate such as John Hermon-Taylor is doing.

broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 12/11/2008 9:39 AM (GMT -7)   
I have watched all the videos and have concluded Prof Borody's approach to MAP therapy as the first excitingly plausible form of addressing this DD that I have heard since my diagnosis! THANK YOU CHOCOLATE! While I have read prior articles on MAP therapy I was not convinced of their place in controlling and/or irradication of this disease....now, the electricity in this house is on again! I find it is also interesting that the prevalence of Crohns increases as more processed foods are introduced into the diet. Not to suggest this is a primary cause, yet another venue to feeding the beast (MAP) on a daily basis. I also agree that we lack proper testing to accurately detect MAP as well. Should I even request this test my results surely would be altered because of my Imuran therapy which Prof. Borody himself suggested in the interview. I also have genetic questions regarding my predisposal to Crohns because of the relationship, although, two different beasts, to TB. My father had TB at the age of 16 and was hospitalized for 2 years with loads of radiation treatment (which at that time, 1940's was the best they had to offer).

The ninth segment of video interview lists different sources, i.e.; articles & websites that I would like to follow up with, however, I am too lazy to stop the video to write down this information. Can you please post a source list of these references for those of us too busy dealing with the monkeys? You've put so much time into this I hate to ask but I feel it would be an valuable list to those of us interested here. You may have to check with a moderator prior to the post though. Should your attempts to post this fail I would be happy to give you my email!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted 12/11/2008 12:42 PM (GMT -7)   
Hi Broomhilda,

Yes imuran could affect the results of your MAP diagnostic test: Drs. Greenstein and Collins have shown that the 6-MP affects MAP in vitro.

I have asked a microbiologist the exact question you are asking now about genetic predisposition to MAP given your father's TB episode; I asked because TB ran on my father's side of the family as well. And he said that predisposition to one mycobacteria will likely result in predisposition to another, so yes because of your predisposition to TB from your father it is likely that you have a predisposition to MAP. Different beasts but sometimes related in ways. This researcher has actually published a comment showing that where rates of CD are highest, rates of TB are lowest, and vice versa, so tentatively suggesting that one mycobacteria will 'eradicate'/'immunize' against another; as has been the case with TB and Leprosy. They plotted CD against national GDP as well as a Western diet and both of those showed less correlation than when plotted against TB. I would be happy to send you this comment as well as other articles. finally_igotit@hotmail.com

www.crohnscanada.org has a lot of articles and the forum is where i have posted a fair bit of recent research, etc.
www.crohns.org is the original voice for MAP research and should be updated soon
www.nulltone.com is a site by young students with IBD at Berkeley, and they hope to have it running soon too.
www.johnes.org is Dr. Collins' site and he has many must watch podcast presentations: "Emerging epidemic and its implications for food" is a good one
www.probiotictherapy.com.au is the site for fecal transplants for c diff and UC.
www.cdd.com.au is Borody's clinic's site

Cheers,
David

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 12/14/2008 9:00 PM (GMT -7)   
Been away for the weekend with no flare smilewinkgrin   Thanks for your reply and I will touch base with you sometime this week after reviewing some of the sites you listed.  Great Job Again!  -Gayle
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