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Crohn's Disease Forum » Your Story » Anti-MAP Therapy gave me my life back


 
01-08-2015, 06:57 AM   #1
Philn
 
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Anti-MAP Therapy gave me my life back

All,

After failing countless other treatments, I have had enormous success with anti-MAP therapy from Prof Thomas Borody here in Australia.

Rather than tell my story on here I made a YouTube video about it, please watch it. Treatment success rates are very high.

https://www.youtube.com/watch?v=4CELZLY2X9c


Phil
01-08-2015, 07:20 AM   #2
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Phil, I'm thrilled you're doing well.

Your video is well research and gives me the tools do my own research and discuss it with my doctor.

Thank you and well done.
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01-09-2015, 11:24 PM   #3
Lady Organic
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thx for sharing Phil. I've watched your video.

how long was the treatment regimen in your case? Is it a standard dose for every patient?

how long did it take for symptoms to improuve and then to get in remission with the antibiotics?

Do you still have visits with the GI who treated you to monitor your remission?

Does he uses the anti-MAP treatment as a first line treatment, or he uses the conventional treatments first with his CD patients? Do you know if he tried the antibiotic treatment for Ulcerative colitis?

thx a lot
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

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pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-10-2015, 05:45 AM   #4
Philn
 
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Lady Organic,

thanks, typically the treatment is indefinite, I am still on it. Some patients respond very well and then they try stopping the treatment after 5 years or so and seeing if symptoms return. In many cases the symptoms do return down the track. In some cases like Dr Judith Lipton she seems to be 'cured' .

Doses can vary a little bit but it's pretty standard. They ramp up the doses slowly to avoid side effects.

I'm on daily:
Rifabutin - 600mg
Clarithrmycin - 1000mg
Clofazimine: 200mg
This is pretty much the maximum dose. They often add a fourth antibiotic as well and it varies as to which one. I've tried many of them with little difference.

Over 5 months I improved but then I plateaued at about 75% and stopped improving. It's been a very gradual slow improvement since then for me. Everyone is different but the vast majority of patients do well. Basically, the prospects for Crohn's patients are very good despite the fact that they get the worst of the worst patients. I'm not in remission, but I'm dramatically better and was very very sick when I went there.

Yes anti-MAP is first line but they will do whatever works, so if Remicade works, they'll do that.

I still see them every now and then, maybe every 6 months.

I'm not sure how they treat UC. I know they have done fecal transplants for it but am not sure of the success rate.

You're welcome! Phil
01-10-2015, 06:58 AM   #5
Crohn2357
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Thank you for sharing your story. I can't watch videos because of my neurological disease but I want to ask you a question about your treatment; I'm sorry if you've already told the answer in your video. I want to learn about the side effects, would you tell about them?
Thanks again.
01-10-2015, 07:02 AM   #6
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Lady Organic,

thanks, typically the treatment is indefinite, I am still on it. Some patients respond very well and then they try stopping the treatment after 5 years or so and seeing if symptoms return. In many cases the symptoms do return down the track. In some cases like Dr Judith Lipton she seems to be 'cured' .

Doses can vary a little bit but it's pretty standard. They ramp up the doses slowly to avoid side effects.

I'm on daily:
Rifabutin - 600mg
Clarithrmycin - 1000mg
Clofazimine: 200mg
This is pretty much the maximum dose. They often add a fourth antibiotic as well and it varies as to which one. I've tried many of them with little difference.

Over 5 months I improved but then I plateaued at about 75% and stopped improving. It's been a very gradual slow improvement since then for me. Everyone is different but the vast majority of patients do well. Basically, the prospects for Crohn's patients are very good despite the fact that they get the worst of the worst patients. I'm not in remission, but I'm dramatically better and was very very sick when I went there.

Yes anti-MAP is first line but they will do whatever works, so if Remicade works, they'll do that.

I still see them every now and then, maybe every 6 months.

I'm not sure how they treat UC. I know they have done fecal transplants for it but am not sure of the success rate.

You're welcome! Phil
Hey phil, just to clarify, when you say you're not in remission, do you mean histological remission? Are you still having many CD symptoms? Ps. Outstanding vid.
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01-10-2015, 08:51 PM   #7
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Hi Crohn2357,

Side effects for me are:
- a tan, although it 's not that strong at the moment even though I've been on anti-MAP for several years
- small amount of arthralgia for the first 6 months, but barely noticeable
- itchiness in my groin, which went away after a while or I used some cream to get rid of it, sometimes it reoccurred but hasn't for ages
- they talk about a metallic taste in the mouth. I had this slightly but I only noticed it when my mouth was very dry. I would have a drink of water and it went away. This also seems to have disappeared.

That's it. All the side effects were very minimal and were absolutely nothing compared to the disease.

There are apparently some serious side effects associated with the medications but they are rare.

Have a listen to the 9-part Borody interview I refer to, he talks about patients' side effects in more detail. All the best


Hi Rollinstone,

Thanks for the feedback. I currently have about 4 loose stools per day. I think they refer to it as 'partial remission??'. Urgency is not perfect but more than manageable. I eat whatever I like and feel fantastic. My latest colonoscopy still showed signs of Crohn's but my bowel has healed dramatically as you can see from the video. My iron and Vitamin D levels still drop slowly over time and I just need to watch these a little bit.

Thanks,
Phil
01-11-2015, 12:39 AM   #8
upsetmom
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Hi Phil

For some reason my understanding was treatment was only for 4 months and most people went in remission, so obviously l got that wrong.

Glad your doing well.
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01-11-2015, 11:55 AM   #9
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Thanks for the reply Phil.

best wishes on this treatment.
01-11-2015, 12:29 PM   #10
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Very good video! I hope you continue to keep us posted here! My son is so young but has also been very sick. This past year the doctors are considering colectomy as they did in your case. (He currently has an ileostomy). The doctors are not jumping quickly to do this as this would be a very big thing to do to a 14yr old. But I hate seeing him very under weight, not growing, delayed puberty, and pain. We are currently doing the new Vedolizumab. But he recently went on Flagyl and Ciprofloxacin. (He did this for 2 weeks in Sept). Both times he has such a dramatic turn for the better. Because of this, his GI is having him stay on it for a couple months. It has made me wonder... why have we tried everything... yet antibiotics is what he has response to. This is why your story has me so interested. I've heard of MAP therapy before.. but you are right that GI's don't give it any credit. We are headed to MAYO Clinic late January and I'm going to bring up your research. It gives me hope that you didn't have to have a colectomy. Thanks for sharing
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symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
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Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-13-2015, 05:21 AM   #11
Philn
 
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Thanks guys for all your positive comments. BriansMom I hope things go well with your son, I'd be interested to know how you go. Phil
01-13-2015, 08:37 AM   #12
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Nicely done Phil, you have just saved me another month of research - currently putting together a formal complaint for NHS England regarding the way they have handled me as a patient and this will only add to the validity of my case.

Thanks. Also, considering passing a link to your vid to a contact in the UK media. As Crohn's was in the spotlight about a year ago for all the wrong reasons eg misinformation, blaming 'junk food' and also someone on a tv interview discussing how it affected their life but the sufferer didnt even do any research into the true nature of the condition therefore brought nothing to the interview that was a revelation - and lets face it Western Med really has been dropping the ball regarding this.

Edit: The things you dont clarify make me wonder - in your video you do mention that you still do have some symptoms, are you ok to clarify if you arent quite perfect after treatment, what your actual symptoms are these days eg what do you have to deal with still?

Thanks mate.
01-13-2015, 04:06 PM   #13
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This video deserves all the possible media attention! So if any of you have media contacts, please forward this to your contacts and ask them to do a story of this and the Crohn's MAP vaccine!
01-13-2015, 06:03 PM   #14
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Nicely done Phil, you have just saved me another month of research - currently putting together a formal complaint for NHS England regarding the way they have handled me as a patient and this will only add to the validity of my case.

Thanks. Also, considering passing a link to your vid to a contact in the UK media. As Crohn's was in the spotlight about a year ago for all the wrong reasons eg misinformation, blaming 'junk food' and also someone on a tv interview discussing how it affected their life but the sufferer didnt even do any research into the true nature of the condition therefore brought nothing to the interview that was a revelation - and lets face it Western Med really has been dropping the ball regarding this.

Edit: The things you dont clarify make me wonder - in your video you do mention that you still do have some symptoms, are you ok to clarify if you arent quite perfect after treatment, what your actual symptoms are these days eg what do you have to deal with still?

Thanks mate.
If you read up a few comments he discusses this
01-13-2015, 06:14 PM   #15
AJC - Australia
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great news Phil!!!
welld one you for searching out and finding Dr Borody and JHT….def, in my opinion, two professors who are on the path to cure.
How are you feeling these days and are you still take the anti-map antibiotics?
good luck you and everyone.
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01-13-2015, 06:23 PM   #16
AJC - Australia
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hats off to you Phil for this very professional video production.
well done.
01-14-2015, 05:10 AM   #17
Philn
 
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Thanks guys for all your positive feedback!

Definitely share the video as much as you can, people need to know this treatment is available.

Happypoopoo yes still on anti-MAP, feel fantastic. I talk about my current symptoms further up.

Phil
01-14-2015, 08:11 AM   #18
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Guilty as charged, sorry.
I'm normally better not to miss info on forums by quick reading but I did just notice when I came back today that symptoms were a couple of posts above me. Thanks.

Phil I have to say I am very much willing to pursue this here in the UK to see if this does succeed in improving my situation.

I just have one final question... I need to watch your video again for sure, but near the end where you talk about the combination of the 2 drugs that Prof Borody uses I am struggling to understand how people not seeing him would be able to get that exact combination?

You cover the fact that the C drug (eg 1 half of the combo) can be acquired elsewhere and I am made aware by your video that a Kings College London Prof would be helpful to me and others in the UK but still, I'm unsure if it is possible to get exactly what Borody was using, or are other sufferers only likely to be able to get half of the combination (the C drug)?

I will invest the time today or tomorrow into watching all of those 9 part Prof Borody videos to find out what the side effects are etc - I am just very surprised that not only did I not managed to find out through all of my online research, that there is someone important in the UK (Kings College London), but also I did not managed to find those 9 part Borody videos on youtube - my google-fu must be lacking...

Thanks in advance and hope you are enjoying all the food the rest of us have had to cut back on ;o)



Edit: I did pass it on to the media, either they will think I'm mad or they will get a decent article out of it and the info will get out there. Here's hoping.
01-14-2015, 01:02 PM   #19
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I will invest the time today or tomorrow into watching all of those 9 part Prof Borody videos to find out what the side effects are etc - I am just very surprised that not only did I not managed to find out through all of my online research, that there is someone important in the UK (Kings College London), but also I did not managed to find those 9 part Borody videos on youtube - my google-fu must be lacking....
That someone important is prof. John Hermon-Taylor, see:

http://crohnsmapvaccine.com

https://www.facebook.com/crohnsmapvaccine
01-14-2015, 04:16 PM   #20
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Thank you so much for this video Philn.
01-14-2015, 07:59 PM   #21
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That someone important is prof. John Hermon-Taylor, see:

http://crohnsmapvaccine.com

https://www.facebook.com/crohnsmapvaccine
Thanks for being helpful - I would have grabbed it from the vid, but it is good to have here in the thread also ;o)
01-17-2015, 07:40 PM   #22
Philn
 
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Thanks guys

Wellen1981 you'll be able to get Rifabutin and Clarithromycin. Using them to treat Crohn's is considered an off-label use but these two antibiotics are widely available.
01-19-2015, 11:59 AM   #23
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Thanks guys

Wellen1981 you'll be able to get Rifabutin and Clarithromycin. Using them to treat Crohn's is considered an off-label use but these two antibiotics are widely available.
Thanks for replying to my main confusion.

I have just spent the best part of today chasing NHS here regarding their lack of effort regarding using anti-MAP - in case anyone in UK understands I have been dealing with PALS Patient Advice and Liason Service within a hospital (UHB QE Hosp Birmingham) after they have screwed up with me in October and continued to do so up to now.

Slightly off-topic but bringing it back to relevant...
Not only have I explained to PALS the lack of consideration for anti-MAP here but also I was called by the head of the gastro unit for the hospital and made it very clear to him regarding the fact anti-MAP is being ignored as a better treatment in the hosp.

If that doesn't give it some clout here in the Midlands at least, well I am looking at formal complaints and not just for my own selfish individual needs, but also to try and get it altered for the benefit of all across the UK.

How anti-MAP can not even be acknowledged at a national level treatment-wise is still beyond me

Edit: Got a letter from the head of Gastro Dept end of last week calling me in to speak to the Gastro Team in Feb. Currently getting as much info together as I can this week.

Last edited by wellen1981; 01-26-2015 at 01:07 PM.
01-27-2015, 05:21 PM   #24
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Hi Philn,

Thanks for making a great video, well done. Great that you are feeling a whole lot better.

Current medical thinking on the aetiology of Crohn's includes the following

-genetic predisposition (to an abnormal immune response)
-bacterial imbalance in the GIT
-infective trigger

There is not much at this stage we can do about genetic predisposition (although drugs can modify the deranged immune response that this causes and low dose naltrexone may promote a more normal immune response) we can however address the other 2.
You are obviously treating an infective cause with your anti MAP therapy but you still have symptoms and have not achieved mucosal healing yet. Are you doing anything to alter the gut bacterial imbalance (as you say you can eat anything), have you thought about adding diet into your treatment regimen? Or has Prof Borody suggested a FMT which is a quick way of correcting your gut microbiome?

Eventually I think Crohn's treatment will address all three elements with maybe the MAP vaccine or SSI therapy rebooting our immune system and thus modifying the genetically determined altered immune response, fixing the gut microbiome with diet, probiotics or FMT (maybe all of these) and if the immune reboot doesn't clear the infective element then an anti-microbial treatment.

Cheers, Freddie
01-28-2015, 05:22 AM   #25
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Phil,

The production quality and research of your video was world-class. Are you a media professional in your career? To me, I wonder if you had help with it. I don't think it would take anything away from it to tell us the story behind the production of your video. Did you write the script? Did you source all of the images? What software was used?

Please don't take this post as a challenge to the content; I have done my own research (albeit much less thorough and less organized than yours) and it agrees with your findings. Just consider this a huge complement for the video being "too good", and there's probably a great reason, but I didn't see it mentioned.
01-28-2015, 09:10 PM   #26
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Again, Phil - I second what 7vNH says…i dont need the info, but i do need to say again that it was a brilliant job, well done………wish you could make some for hermon taylor himself, that would be ACE…..some footage of him in the lab etc….please, pretty please.
02-07-2015, 01:24 AM   #27
Philn
 
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All, sorry for my late reply... I really appreciate the feedback! I'm glad the video is making an impact

7vNH,
I wrote the story myself but I contacted Dr Judith Lipton and asked her to fact-check. She also gave some advice on explaining things in a more professional and accurate manner. eg terms like "Borody protocol" etc....but no, it's all my story, script and research. I contacted people for pictures, like Johnes.org for example, and JHT's daughter on fb for a picture of him, and took the rest myself or bought pics from Shutterstock. I hired a camera and did my own filming, then paid a freelance video editor to do the animations, effects, text and put it altogether for me....she used Premiere and I did the audio in Pro Tools (music's always been one of my hobbies.) She did it on the cheap because she could see the value in it. I didn't even bother going to the media or a production company because I felt they would probably dismiss it and I wanted to have creative control of it.

Working on it, on and off, took about a year and my editor and I just kept improving it over time. CDD was not involved in any way but I told them I was going to tell my story on YouTube and asked if I could take some pictures and they said "sure" and I also asked permission from people before quoting them. I'd never made a video before.

I did this of course only because it's too important, people are so sick, as I was, and suffering unnecessarily with this disease and I can't believe no other patients before me had told their story like this.

Freddie,
I briefly stopped anti-MAP after 6 months because they thought I should have been doing better and Prof. Borody tried FMT with me but it didn't work. I don't know why not but they told me it's very difficult to treat Crohn's with FMT although some patients have had success with it. Their experience shows it's not anywhere near as easy as treating C.diff, for example. I currently eat pretty much a normal diet, high fibre 40+g /day, more fruit and veg and preferably less grains etc, but that's just my choice, not anything to do with managing my disease. What I eat now doesn't seem to affect my symptoms. I think it's healthy and probably good for my microbiome but I'm on 4 antibiotics so I don't know how effective eating fibre will be or if it's even worth it.
There's talk that stopping and starting anti-MAP can cause resistance in some patients and that scares the hell out of me so I'm happy where I'm at and happy on anti-MAP. I'm very well, have my life back and I'll wait for any future vaccines Thanks again for the feedback!

Phil
02-07-2015, 10:28 AM   #28
7vNH
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...
I did this of course only because it's too important, people are so sick, as I was, and suffering unnecessarily with this disease and I can't believe no other patients before me had told their story like this.
Thanks for doing so...and in such style!
02-07-2015, 11:02 PM   #29
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Has anyone heard if anti-MAP therapy can be used as maintenance therapy? For example, after having an elective resection after all other meds have failed? Or is it for active disease only?
02-08-2015, 09:43 PM   #30
24601
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I feel so passionately that the research John Hermon-Taylor has been doing for a MAP diagnostic test and vaccine should be completed - and reading stories like these just makes that belief even stronger.

Very pleased you've had such success Phil and that others have too. Very much hope that others can benefit in the same way and regain their health, even if it's quite possibly a touch late for me - lost too much bowel, you know how it goes.

Tomorrow I'm planning to take my "I support CrohnsMapVaccine.com" photo (inspired by this slideshow) in front of the Houses of Parliament...perhaps the London Eye too.

Would anyone else like to contribute a photo to this project that's planned on the Crohn's MAP Vaccine facebook page? I think we all need to get our voices heard and hopefully encourage more donations as well!

Donate at:
https://www.justgiving.com/CrohnsMAPVaccine-MEN9150/
In the US:
https://www.crowdrise.com/CrohnsMAPV...myhermontaylor

Also anyone who wants to pursue this treatment in the UK should ask to be referred to Jeremy Sanderson at Guy's and St Thomas' Hospital (just a tiny correction on an impeccable video). I believe some of the other doctors there are also on board with this as a treatment option now too and Jeremy Sanderson is certainly these days, though ironically wasn't when JHT suggested I consult him in 1999, so if anyone else is revisiting the possibility of this treatment things have changed even at that same hospital.

stelarjess: yes, I believe this is considered a maintenance treatment as well as a potential treatment to induce remission and certainly very suitable if you are not responding to any other meds. The standards for active disease vary and after a resection you are certainly at risk of disease recurrence. It doesn't usually just go away. I think most gastros would expect to be treating you with some drugs. Others may well be better qualified to answer this question though.

Last edited by 24601; 02-10-2015 at 04:22 AM.
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