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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
 

DJW

Forum Monitor
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.
 

Lady Organic

Moderator
Staff member
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
 
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
 
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.
 
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.
 
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
 
Location
,
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.
 
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 :)
 
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
 
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.
 
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!
 
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 :)
 
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.
 
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
 
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.
 
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
 
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 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 :confused:

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.
 
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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
 
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.
 
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.
 
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
 
...
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!
 
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?
 
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/CrohnsMAPVaccine/…/amyhermontaylor

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.
 
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Just posting to let anyone interested know that I am starting to make plans to get onto Anti-MAP treatment and will post again when I have more info.

Would be good if anyone in the UK who is also on Anti-MAP or has been, could chime in on here as it looks like I am the only person in the UK currently - I can't be the only UK person on this forum can I?

Lets treat the condition, not the symptoms :thumright:
 
Hi Wellen1981,

There are quite a few patients at Guy's and St Thomas' that do anti-MAP therapy so you're definitely not the only one in the UK! Good luck with your treatment! Hope it works. Let us know how it goes!
 
Hi Wellen1981,

There are quite a few patients at Guy's and St Thomas' that do anti-MAP therapy so you're definitely not the only one in the UK! Good luck with your treatment! Hope it works. Let us know how it goes!
Cheers thats why i put 'in the uk on this forum', i cant believe no one else on here in the uk is involved in anti-map.

Also how do you know patients are on anti-map at guy and st thomas? is it an assumption or do you have first hand knowledge as i am keen to discuss anti-map with anyone in the uk on here who is doing it or aware/considering it thanks!
 
There's always been a connection between Guys' and Prof Hermon-Taylor from way back and the person that he usually recommends people see in London is Dr Jeremy Sanderson.

When I spoke to Prof Hermon-Taylor getting on for 20 years ago that's who he recommended I should see and I did. Back then Dr Sanderson didn't think I should do anti-MAP therapy and dissuaded me from trying - rightly or wrongly I can't really say given my particular circumstances at the time and I didn't see him again. But after quite a few years I came to be a patient at Guys' and St Thomas' and recently I tried anti-MAP therapy at Dr Sanderson's suggestion and under his care. It seems he now feels the evidence is stronger - and perhaps that the antibiotics used are better? - and I also think he has mellowed in the intervening years and is a better doctor in terms of listening and understadning the patient experience than he was when I first met him. Other doctors at Guy's and St Thomas' hospital have talked to me about anti-MAP therapy and the promise the vaccine may hold for treating Crohn's and have led me to understand that this hospital is and will be a centre that people are referred to for anti-MAP therapy.

I know that people do get referred to Guy's and St Thomas' from all over the country but I imagine that even if you can't find a doctor closer to you who uses anti-MAP therapy for Crohn's that it should be possible for any GI to consult with Dr Sanderson (if they are willing) and oversee your treatment.
 
There's always been a connection between Guys' and Prof Hermon-Taylor from way back and the person that he usually recommends people see in London is Dr Jeremy Sanderson.

When I spoke to Prof Hermon-Taylor getting on for 20 years ago that's who he recommended I should see and I did. Back then Dr Sanderson didn't think I should do anti-MAP therapy and dissuaded me from trying - rightly or wrongly I can't really say given my particular circumstances at the time and I didn't see him again. But after quite a few years I came to be a patient at Guys' and St Thomas' and recently I tried anti-MAP therapy at Dr Sanderson's suggestion and under his care. It seems he now feels the evidence is stronger - and perhaps that the antibiotics used are better? - and I also think he has mellowed in the intervening years and is a better doctor in terms of listening and understadning the patient experience than he was when I first met him. Other doctors at Guy's and St Thomas' hospital have talked to me about anti-MAP therapy and the promise the vaccine may hold for treating Crohn's and have led me to understand that this hospital is and will be a centre that people are referred to for anti-MAP therapy.

I know that people do get referred to Guy's and St Thomas' from all over the country but I imagine that even if you can't find a doctor closer to you who uses anti-MAP therapy for Crohn's that it should be possible for any GI to consult with Dr Sanderson (if they are willing) and oversee your treatment.
It's funny you should say that about Dr Sandersons aversion to being receptive to the treatment in the early days. I cant quite remember where i read it, but there is a reference to him not being convinced in the past but then after he looked into it more he saw the evidence and was convinced.

I am based at a UK 'super hospital' costing £534 million GBP and touting itself as offering the 'best in care' my GI is not only totally non receptive to more recent treatments on the basis of more current understandings, but he is also not even aware of current state of play for the condition in the specialty profession - none of the 8 GIs at the hospital knew about anti-MAP therapy or even what MAP was.

I am not satisfied with the hospital at all and either I make a formal complaint or I have to increase the hassle and end up using guy and st thomas hospital and have to go there from birmingham all the time.

I just want my local hospital to do the right thing and offer their patients treatment targetting the infection and not just messing with the body with symptom aimed treatments, leaving the root cause untreated.

Seems a fair request right?
 
Hi, I'm sure you know about www.crohnsmapvaccine.com but just incase you haven't please take a look. There are associated facebook groups each with different aims, some raise funds and awareness for the research , some facillitate anti map therapy discussions and advice. Professor Hermon-Taylor's daughter also contributes updates to the groups. Fund raisers are needed desperately as all this research depends on donations to keep it going. The Professor is convinced he has the cure for Crohn's sitting in his research lab but funds are needed to start human clinical trials next year.

Anyone trying or thinking of trying this treatment should have a good look at the website. There is also a downloadable information document (248 pages long ) aimed at patients and doctors but mainly doctors, which explains the reasearch and science behind the vaccine. This is an excellent document to mention to your Gastro Doctors especially if they have never heard of MAP.

Good luck with the treatment. I am trying to get my 8 year old daughter treated with anti map therapy but it's seems to be even harder in paediatrics to get a doctor to prescibe anti Map antibiotics..
 
Hi, I'm sure you know about www.crohnsmapvaccine.com but just incase you haven't please take a look. There are associated facebook groups each with different aims, some raise funds and awareness for the research , some facillitate anti map therapy discussions and advice. Professor Hermon-Taylor's daughter also contributes updates to the groups. Fund raisers are needed desperately as all this research depends on donations to keep it going. The Professor is convinced he has the cure for Crohn's sitting in his research lab but funds are needed to start human clinical trials next year.

Anyone trying or thinking of trying this treatment should have a good look at the website. There is also a downloadable information document (248 pages long ) aimed at patients and doctors but mainly doctors, which explains the reasearch and science behind the vaccine. This is an excellent document to mention to your Gastro Doctors especially if they have never heard of MAP.

Good luck with the treatment. I am trying to get my 8 year old daughter treated with anti map therapy but it's seems to be even harder in paediatrics to get a doctor to prescibe anti Map antibiotics..
While I am aware of the first bit you posted I was not aware of the 200+ page info for med staff - I will check it out thanks.

Although I am very much behind the evidence of the findings of their work, I am more interested at this stage in talking to patients who have gone through the therapy or are thinking about taking it as when you get closer to making that decision to do a new treatment, it is down to the end result of the outcome for patients who have done it that will allow me to finalise my decision as to whether I do finally commit to trying it.

I still can't bring myself to try it without getting the opinion of those first hand who have been on it.

I encourage anyone who has had it to post here regarding their experience of the therapy including outcomes of it as that will be the tipping point for me finally commiting one way or the other on anti-map therapy - I can't just say 'I will try it' on the basis of the both Professors work. I need to be able to verify the results from actual patients really as well - this is the most comprehensive approach I can come up with to allowing my decision to feel like it was done sensibly.

Hope that makes sense.

Edit: Also with regards to Prof Borody and Prof Herman Taylor..
They both are brilliant for the efforts they have made and the progress they have made, but it always worries me when Prof Herman Taylor makes statements as his tend to be done with so much passion, enthusiasm and belief, that sometimes the rest of the scientific/medical community just end up dismissing it due to his choice of phrasing delivery.

Prof Borody on the other hand, has a very scientific, clever way with delivering comments that are often put out in such a way that removes all bias and just leaves undeniable, matter-of-fact statements that aren't open to negative refute or any scrutiny/misinterpretation.

Out of the 2 I would always hope Prof Borody does the spokesperson duties with regards to their work and findings!

Still think Prof Herman Taylor is a legend though for his work, always will.
 
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Wellen81,

I do think it's crazy that the GIs at your hospital aren't open to the idea because it seems to me that there is such variation in what works for one Crohn's patient and not for others. It seems unreasonable to me too because it's not an expensive treatment or difficult to monitor or one with a high risk of side effects.

I can only speak to my experience at Guy's and that was, after my initial appointment circa 1999 when Dr Sanderson was fairly dismissive of the evidence for a link and more than a little discouraging about the likelihood of success and put a strong emphasis on potential side effects and the difficulty in eradicating MAP, that it was suggested to me as the last in a list of treatments to try before a stem cell transplant. It was a strange experience to come full circle and be sitting in front of the same doctor some 13 or 14 years later who had persuaded me not to try it before and now was convincing me it was worth a shot but I accepted that it might be the treatment to work for me and decided to try it. I should add that we combined the therapy with my existing treatment of methotrexate plus adalimumab.

I really can't say anything about the effectiveness even in my own case with that combination of meds though since I simply couldn't tolerate the antibiotics - there are some options but I had a severe reaction to one antibiotic and then struggled on for a while with lesser but still significant side effects on an alternative antibiotic.

I do believe that it is effective for some patients - because of the experiences we hear from people on this forum now and then like the OP here and also because I don't think the doctors at Guy's and St Thomas' that I have talked to and know would be taking it so seriously now if there weren't something to it. But it would seem that there are a whole range of treatments that are effective for some people and not for others - telling which one might work for ourselves is of course the real question that we all want an answer to and I think we can only get that answer by trying them. I think we all wish there was a better way than trial and error but I think that is the current state of Crohn's treatment.

Are you currently on any other meds? I do think a lot of GIs might be happier to prescribe it if it's in combination with other therapy. I know that for many that will defeat the purpose - which is I think often to avoid the other medications and their associated side effects. However if you're only goal is to get healthy and you're prepared to try more than one therapy at a time I think this ironically might mean you are more likely to persuade a GI to let you try it. Of course some of them just don't like the idea full stop.

Good luck with everything! And do keep updating and talking about anti-MAP therapy everyone! It's great to hear from anyone who tries it or is interested it and the variety of responses that everyone gets from their GIs too when the subject is brought up!

I do very much hope we can get the vaccine developed because at the very least we should rule out MAP causing even a part of our GI problems for whatever portion of the population is affected.

In short I think it is very worthwhile research even if it doesn't turn out to help all of us with Crohn's and I hope that we can get more people to get behind it and support the cause without feeling like it's about choosing the winning team and the correct theory.
 
It's a tough decision to make , if it helps there are people on the associated facebook groups ( links can be found on the crohnsmapvaccine website ) who have been on the anti map therapy for a while and others who have just embarked on this particular therapy and I do believe a few of them at least are from the UK. I wish you all the best in your decision making process I know it's enormously difficult and we all have our different approaches. I hope whatever decision you make it results in a positive outcome for you.
 
Yes, wellen81, that is just the sort of criticism that I have heard used against Hermon-Taylor's research - that he believes too much, in essence. I don't think anyone is saying that anything he does in his reasearch is unscientific but that when he talks he gives the impression that we are already there and things are already proven (these aren't my arguments by the way so I really can't be more specific about what others think!)

It seems to me completely ironic because research requires passionate people who believe in their ideas (who else wants to spend years and years dedicating themselves to proving or disproving a hypothesis and endless lab work) and yet if that comes across when they speak they are apparently condemned for it (and not given funding).

You may just be right and if only Hermon-Taylor and Borody worked side by side they'd be the perfect team, but it's my feeling that if we had a hundred more Prof Hermon-Taylor's working on all the possible cures for Crohn's (and able to get funding) then we'd have one already!

I really hope this is the cure but I certainly think Hermon-Taylor's life's work has been worthwhile regardless and I just hope he gets to complete it!
 
Yes, wellen81, that is just the sort of criticism that I have heard used against Hermon-Taylor's research - that he believes too much, in essence. I don't think anyone is saying that anything he does in his reasearch is unscientific but that when he talks he gives the impression that we are already there and things are already proven (these aren't my arguments by the way so I really can't be more specific about what others think!)

It seems to me completely ironic because research requires passionate people who believe in their ideas (who else wants to spend years and years dedicating themselves to proving or disproving a hypothesis and endless lab work) and yet if that comes across when they speak they are apparently condemned for it (and not given funding).

You may just be right and if only Hermon-Taylor and Borody worked side by side they'd be the perfect team, but it's my feeling that if we had a hundred more Prof Hermon-Taylor's working on all the possible cures for Crohn's (and able to get funding) then we'd have one already!

I really hope this is the cure but I certainly think Hermon-Taylor's life's work has been worthwhile regardless and I just hope he gets to complete it!
They did used to work side by side at the time Borody cracked peptic ulcers with others in the 80s I believe, I know for sure that Prof H T was in Oz working with Prof B in the past and then moved back over to the UK after to get the ball rolling with their findings at Kings College London I think.

The CDDC in NSW Australia looks like a great place to keep an eye on for the future of condition developments that much I am sure of.


EDIT: As it is likely through supporting evidence that it is not pointing to be just down to one type of infection in patients, I really dont believe the word cure should be ever used for anti-MAP, it just seems that those certain people infected with the specific infection will respond to the matching treatment. By that I mean those infected with MAP will respond to anti-MAP, but what if they are also infected by the other things as well. That is what makes it so hard to make progress with treatments for these condition getting taken seriously.
People want it clear and simple - to be able to blame one condition on one thing. It's about time these umbrella terms Crohn's and IBD etc were removed and replaced by the exact sub-categorisation for each actual causative infectious pathogens for the sake of accuracy and being specific.

Sadly we are still far away from those days so are stuck with huge amounts of generalisation and catch-all terms like IBD CD and UC.

I am intrigued to understand why exactly there are differences between CD and UC with regards to talk of anti-MAP showing evidence of not being any use to people with UC - I wonder what is the specific difference with that.

My last thought is on another recent treatment SSI - my understanding of that so far is that it targets the point at which a process happens that is called macrophage to deal with bad bacteria and the premise that this function is either not wokring correctly or has been somehow turned off or deactivated.
My big question with this therapy is does it actually warrant usage alongside anti-map or is it to resolve a problem caused by a different infection. So many questions, so many afflicted.

Also sorry missed your previous question... on no meds anymore just drastically altered my diet and got rid of the crippling pain, terminal ileum ulcers and inflammation!
 
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I really dont believe the word cure should be ever used for anti-MAP, it just seems that those certain people infected with the specific infection will respond to the matching treatment. By that I mean those infected with MAP will respond to anti-MAP,
I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed.

Can anyone comment on that before I have to dig out my immunology books again?

In those people however the antibiotic therapy is still a viable option.
 
Dear Phil

Congratulations on the wonderful presentation.

I always wondered why many Crohns patients are found to have granulomas when these are associated with an immune response to an infection such as mycobacterium. It is usually a way for the immune system to try and contain an infection.

I was wondering if you had granulomas found in your biopsies, and if you know if patients with granulomas have a greater chance of success with the therapy?
 
Dear Phil

Congratulations on the wonderful presentation.

I always wondered why many Crohns patients are found to have granulomas when these are associated with an immune response to an infection such as mycobacterium. It is usually a way for the immune system to try and contain an infection.

I was wondering if you had granulomas found in your biopsies, and if you know if patients with granulomas have a greater chance of success with the therapy?
Great question, I wonder this too, as granulomas were found in the pathology of my small bowel resection.
 
Hi King Of Orange/stelarjess, sorry for my late response. Thanks for the feedback on the video, no they didn't find any granulomas in my biopsies. I'm not sure if having granulomas would affect someone's chances on anti-MAP or not although I know some Crohn's patients get them and at the CDD they feel it supports their theory on MAP for the reason you mentioned above. At the CDD they don't really talk much about these types of things (ie what affects someone's chances of responding or not) I think because the response rate to anti-MAP is pretty good. Other medications seem to be more hit and miss.

Phil
 
I guess that your biopsies simply don't always contain granulomas. My son's first granulomas were found when he was three (a lot of them!), next year NO granulomas, year later granulomas again! And so on and so on!
 
While advocating for anit-map therapy, this video contains a remarkably fair survey of the current research including its limitations. I wish the mainstream medical community acknowledged the efficiency rates forconventional therapy so completely. The point that anti-map efficacy rates are higher than biologicals is an important one.

Did Doctor Borody's office help fund this video? The production quality and information are outstanding. Do you pay out of pocket for the treatment in Australia? How are you doing now?

Thank you for this contribution!
 
I've been on antiMAP since Nov 2014 after having Crohn's for 25 years. I tried many of the conventional treatments and nothing worked well as a maintenance therapy. After two months on AMAT I was in full remission. I had a persistant case of Crohn's, meaning that a therapy would work for a few months or a year, but then the Crohn's would break through and I'd be sick again. I tried diet modification with gluten, dairy, and incoporated all sorts of supplements and yoga. While those worked for a while, the Crohn's always broke through. It's been about 6 months now, so it will be interesting to see if I can sustain long term remission. I'm starting LDN to boost my immune system to give me the best shot. I also tested MAP positive with the New Zealand lab. I figure killing as much MAP as I can while regulating my immune system may give me the best chance. My doc is an integrative health MD who's receptive and conferenced with Dr. Chamberlin.

As a side note, a bunch of these docs will be speaking at a patient targeted symposium in Chicago in mid-August. I'm hoping to get more details soon, but if you're in Chicago or interested, I'll let people know when I know. I do know that Dr. Chamberlin, Dr. Amy Hermon Taylor and John Aitken from the New Zealand lab are all confirmed. Kind of a meeting of the MAP minds!
 
My son recently diagnosed and I follow the map vaccine very closely as it provides some hope. IBD doesn't run in my family and I keep questioning if the flu vaccine over his childhood played a role in the environment role of crohns. The guilt is extremely overwhelming.
I pray everyday for this vaccine..
 
Hi Bluesky,
thanks for your feedback. Please see my comments on this thread dated: 02-07-2015, 04:24 PM re the making of the video. The CDD was not involved in any way but I did tell them that I was going to do this. I made the video because given what I had been through and what I knew I felt I had a responsibilty to say something and I can't believe I'm the first person to do it.

Still some symptoms, I cover this earlier in the thread but I have my life back which is everything to me. I pay about $2500 a year for the meds, they're not covered under medicare as it's an off-label use.

Irishgal,
I too tested positive for MAP under that NZ test you're talking about, not sure if they still test for it though. I've been told resistance can develop if you stop and start anti-MAP so I would speak to one of the docs about it before doing that. I wanted to participate in a dietzia trial which meant having to stop anti-MAP and they told me about one girl who was doing well on anti-MAP, stopped taking it, got sick again and then anti-MAP didn't work for her and she had to have her bowel removed. Needless to say I chose not to participate in the trial.
 
Philn - thank for this info. With so few people in AMAT, and patient experiences are helpful to me. I'm planning to stay on this for a couple of years until my blood tests MAP negative. The LDN has been going very well and I'm not yet up to the 4.5 dose. My joints are doing way better, but that could be the addition of Reishi mushroom supplements too. Either way, I'll take it! I believe John still tests for MAP in NZ. My friend just sent her blood last week, and it's getting cheaper. Such a great guy. As for Dietzia, I looked into that too. Not available here in the US at all - you're lucky you live in Sydney! I'd consider it as an alternative if AMAT failed, and hopefully by then Dr. Borody will have completed the study and have refined the protocol. It seems like an excellent alternative for kids if it works. :)
 
Irishgal, can you pls give me the details of what you know about MAP testing because people ask me about it and so far I haven't been able to help them. I was told by the CDD to contact John Aitken who is apparently now at Newcastle University here in Australia but he didn't return my emails. I called Canterbury Health Laboratories in NZ and they said testing was done as part of research a few years but couldn't help me further. Yes, I'm well aware of lucky I am to be well and to live in exactly the right city in the world :)
 
Hi All,

I finally have details regarding the Chicago Symposium I talked about in the earlier post - a kind of meeting of the MAP minds! First, a huge thanks to PhilN for allowing his video to be shared on their site. It's August 16th, and full title is International Research Symposium: Game Changing Concepts in Crohn's Medicine. Presenters are Dr. William Chamberlin, John Aitken, Dr. Amy Hermon-Taylor, Dr. Michael Collins and Patrick McLean from Redhill. Lots of exciting research to be discussed plus there's info on getting a MAP test from John Aitken's lab in the FAQs (at the end of Aug.)

I'm sure you can find the official site on your own, and the coolest thing about it is that the presenters are writing blogs about Crohn's topics leading up to the symposium! A new one pops up every few days. Hope this helps you all! :)
 

Lady Organic

Moderator
Staff member
Hi Philn and others who know a lot about MAP treatment.

where is your disease located?
do you guys know of patients who have been doing well on anti-map therapy with large bowel/rectum disease for instance or with peri-anal fistulas?

Im on cleveland'clinic website looking at crohn's disease differential diagnosis and I read this: '' Â Infection with Yersinia enterocolitica or Mycobacterium tuberculosis can cause inflammation in the terminal ileum resembling Crohn’s disease''
could some people be misdiagnosed as CD and in fact have another condition by being map infected?... a lot of ''CD'' patients only have terminal ileum problems...
 
Lady Organic - that's so interesting! I looked at the website and that statement seems to made in a vacuum with no supporting documentation. I'd love them to explain it further or see the study where it came from. My take on that is that Crohn's disease is an umbrella name for different diseases which show the same pathogenesis but have different origins. It could be that there are multiple causes for what is now called Crohn's disease, and MAP is a prevalent one. I've never heard of a MAP infection which mimics Crohn's but which is called something else like they suggest. I'd just call it Crohn's disease caused by MAP. It's kind of splitting hairs.

As to your other questions, I can only speak for myself. My disease was primarily located in the terminal ileum for many years, and I eventually had a resection to remove it. A few years after the resection (while I was on Humira) I developed about 5 inches of proctitis which my GI said was Crohn's affecting my rectum. Not fun at all. Around the same time I got e nodosum and then a rare metastatic skin version of Crohn's, which the biopsies showed was granulamatous inflammation affecting my skin not continuous with my digestive tract. That was horrible too. I believe I had a very small fistula that would come and go at the same time. Basically, my body was just breaking and I felt that the Crohn's process was jumping around, finding avenues to affect because I had taken out the disease in my terminal ileum. In my case, a systemic infection (MAP) makes complete sense and would provide a mechanism for how my case went.

I got on AMAT and all of the presentations went away, and have stayed that way since Jan 2015. Hope this helps!
 

Lady Organic

Moderator
Staff member
AMAT is the name for anti-map combo antibiotics?

this put your your skin issue to remission as well? wow if this is the case that is greatly encouraging. Gives me hope all my CD extra-intestinal related symptoms could go away with such a therapy.
 
Lady Organic - yes, it stands for Anti-MAP Antibiotic Therapy. It put an end to my GI Crohn's issues, the severe Crohn's related proctitis, the joint swelling, the metastatic skin portion and all of my blood work comes back in the middle of normal range. All of the Crohn's is gone! I'm not saying this will last forever, but boy has it been a great 8 months. I just wish someone had told me about this earlier, which is why I'm sharing it now. If nothing else, patients can research it and decide if it's something they'd like to try with the help of their doc.

I also take a bunch of supplements (Vit D, Reishi mushroom, iron, zinc, Vit C, bromelain, omega 3, VSL3) that I don't think were getting absorbed when I was sick, but I think they started to help some when the AMAT fixed my absorption pathways. Nice to pay for these things and get the benefits instead of them going right through me.
 

Lady Organic

Moderator
Staff member
really encouraging! are you taking a similar cocktail like the original poster of this thread (Philn)?

Rifabutin - 600mg
Clarithrmycin - 1000mg
Clofazimine: 200mg

may I ask in what country you are being treated?

could you also share the link to the lab that tested your MAP infection?
thx a lot!
 
I originally started on:

Rifampin, 600mg
Clarithromycin, 1000mg
Levofloxicin, 500 mg

I'm working on getting clofaz since I'm in the US and it's very harder to get here than where Phil is. The levo replaces it, but it has more side effects. It caused me bad joint pain and neuropathy, so I had to drop it and am just on the first two now. I also added low dose naltrexone in an attempt to modulate my immune system. I don't know if that's working or not since I felt pretty great when I started it. Need to get clofaz since the triple therapy is what works best. Phil's cocktail is what Dr. Borody uses and it's also what's in the RedHill pill.

John Aitken's lab is a bit of a search. Here's the link to their web page which has a contact form. I'd start with that:

http://www.otakaropathways.co.nz/

Dr. Chamberlin got me in touch with him directly when I wanted to start AMAT and get my blood tested. He's a great guy. I've enjoyed getting to know him through my test and meeting him at the symposium. Their research interests me particularly since I used to work in a hospital micro lab in college.
 
While I think AMAT holds possibilities for some (not all but enough to be worth studying) I find some of their claims concerning. For example they claim low dose AMAT was more effect than Remicade at the highest dose. They say AMAT has a 41% remission rate at 52 weeks but Remicade has a 26% remission rate at the highest dose (they don't specify but source the ACCENT 1 trial. As per pub meds info on the ACCENT 1 trial:

FINDINGS:

335 (58%) patients responded to a single infusion of infliximab within 2 weeks. At week 30, 23 of 110 (21%) group I patients were in remission, compared with 44 of 113 (39%) group II (p=0.003) and 50 of 112 (45%) group III (p=0.0002) patients. Thus, patients in groups II and III combined were more likely to sustain clinical remission than patients in group I (odds ratio 2.7, 95% CI 1.6-4.6). Throughout the 54-week trial, the median time to loss of response was 38 weeks (IQR 15 to >54) and more than 54 weeks (21 to >54) for groups II and III, respectively, compared with 19 weeks (10-45) for group I (p=0.002 and p=0.0002, respectively). Infliximab safety was consistent with that seen in other trials of infliximab in Crohn's disease and rheumatoid arthritis. In particular, the incidence of serious infections was similar across treatment groups.

They also compare remission rates are differing periods of time (Anti-map:52 weeks vs humira: 56 weeks and Remicade 30weeks. )

Again not trying to dissuade anyone but I would be cautious about making your choices based on their remission numbers.
 
While I think AMAT holds possibilities for some (not all but enough to be worth studying) I find some of their claims concerning. For example they claim low dose AMAT was more effect than Remicade at the highest dose. They say AMAT has a 41% remission rate at 52 weeks but Remicade has a 26% remission rate at the highest dose (they don't specify but source the ACCENT 1 trial. As per pub meds info on the ACCENT 1 trial:

FINDINGS:

335 (58%) patients responded to a single infusion of infliximab within 2 weeks. At week 30, 23 of 110 (21%) group I patients were in remission, compared with 44 of 113 (39%) group II (p=0.003) and 50 of 112 (45%) group III (p=0.0002) patients. Thus, patients in groups II and III combined were more likely to sustain clinical remission than patients in group I (odds ratio 2.7, 95% CI 1.6-4.6). Throughout the 54-week trial, the median time to loss of response was 38 weeks (IQR 15 to >54) and more than 54 weeks (21 to >54) for groups II and III, respectively, compared with 19 weeks (10-45) for group I (p=0.002 and p=0.0002, respectively). Infliximab safety was consistent with that seen in other trials of infliximab in Crohn's disease and rheumatoid arthritis. In particular, the incidence of serious infections was similar across treatment groups.

They also compare remission rates are differing periods of time (Anti-map:52 weeks vs humira: 56 weeks and Remicade 30weeks. )

Again not trying to dissuade anyone but I would be cautious about making your choices based on their remission numbers.
The results for their current multinational trials are going to answer a lot of questions...
 
While I think AMAT holds possibilities for some (not all but enough to be worth studying) I find some of their claims concerning. For example they claim low dose AMAT was more effect than Remicade at the highest dose. They say AMAT has a 41% remission rate at 52 weeks but Remicade has a 26% remission rate at the highest dose (they don't specify but source the ACCENT 1 trial. As per pub meds info on the ACCENT 1 trial:

FINDINGS:

335 (58%) patients responded to a single infusion of infliximab within 2 weeks. At week 30, 23 of 110 (21%) group I patients were in remission, compared with 44 of 113 (39%) group II (p=0.003) and 50 of 112 (45%) group III (p=0.0002) patients. Thus, patients in groups II and III combined were more likely to sustain clinical remission than patients in group I (odds ratio 2.7, 95% CI 1.6-4.6). Throughout the 54-week trial, the median time to loss of response was 38 weeks (IQR 15 to >54) and more than 54 weeks (21 to >54) for groups II and III, respectively, compared with 19 weeks (10-45) for group I (p=0.002 and p=0.0002, respectively). Infliximab safety was consistent with that seen in other trials of infliximab in Crohn's disease and rheumatoid arthritis. In particular, the incidence of serious infections was similar across treatment groups.

They also compare remission rates are differing periods of time (Anti-map:52 weeks vs humira: 56 weeks and Remicade 30weeks. )

Again not trying to dissuade anyone but I would be cautious about making your choices based on their remission numbers.

Hi Frozen Girl - I'm glad you pointed this out, since this was one of my questions too. These studies are so complex and the results nearly impossible to sift through, that I did some digging to address this. I think the key to understanding this is looking at all three studies in an intent-to-treat analysis, which is different than how the data was reported in all three, despite Accent I and Charm saying they used an ITT analysis. The point behind an ITT analysis from what I understand, is to mimic real conditions in a doctor's practice. It avoids overly optomistic results. All the initial paticipants are left in the final analysis, rather than deleting those who don't respond, don't take the meds as directed, drop out due to side effects, etc.

So here comes the math (sorry!) In Accent I, they started with 573 people, and gave them each an initial dose of Remicade. However (and here's the kicker) they only randomized the ones (335 people) who responded after two weeks!! It seems intuitive that if you only look at the people who initially respond, your end data will look pretty decent. If you divide the entire 573 by 3, you get 191 people total in each of the three randomized groups. In the highest dose group, 50 people responded, so 26% (50/191) using an ITT analysis.

The Humira Charm trial did the same thing, but in a more complicated way. They had 854 people to start and narrowed down to 778 due to some drop outs, people not following protocol, severe effects, etc. They randomized that group and ended up with 257 in the highest doseage arm, but then they divided them again in each arm to responders and non-responders. Their remission rate of 47% (a whopping 65 people) in the highest doseage arm only looks at 157 of the randomized responders! Again, it seems intuitive if you only look at the responders, your data will be pretty good. Reanalyzing this using either the 257 or the 854/778 divided into thirds gives you about 24% remission rate at 56 weeks. Not super great. Only 1 out of 4 people will get to remission with Humira. I also found it interesting that they mentioned that the most common reason for dropping out was due to adverse effects. Again, I just think people should consider all the data when making a big decision about their treatment. Here's the full Charm study:

https://health.ucsd.edu/specialties/gastro/areas-expertise/ibd-center/Documents/(G) 2007 CHARM Study adalimumab maintenance therapy for Crohn's disease.pdf

As to the 30 weeks vs. 52 weeks, Accent I only gave 30 week data, even though they ran it for 54 weeks. I wish they had given the 54 week data, since most people are on Remicade for a year or more.

In the end, Remicade/Humira are FDA approved and AMAT isn't yet, so I respect people's decision to choose the therapy that they're comfortable with, just get all the info before deciding. Personally, I've been on all three and AMAT was the only one that worked. I have other friends who have done beautifully on Humira/Remicade as well.
 
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Hi Frozen Girl - I'm glad you pointed this out, since this was one of my questions too. These studies are so complex and the results nearly impossible to sift through, that I did some digging to address this. I think the key to understanding this is looking at all three studies in an intent-to-treat analysis, which is different than how the data was reported in all three, despite Accent I and Charm saying they used an ITT analysis. The point behind an ITT analysis from what I understand, is to mimic real conditions in a doctor's practice. It avoids overly optomistic results. All the initial paticipants are left in the final analysis, rather than deleting those who don't respond, don't take the meds as directed, drop out due to side effects, etc.

So here comes the math (sorry!) In Accent I, they started with 573 people, and gave them each an initial dose of Remicade. However (and here's the kicker) they only randomized the ones (335 people) who responded after two weeks!! It seems intuitive that if you only look at the people who initially respond, your end data will look pretty decent. If you divide the entire 573 by 3, you get 191 people total in each of the three randomized groups. In the highest dose group, 50 people responded, so 26% (50/191) using an ITT analysis.

The Humira Charm trial did the same thing, but in a more complicated way. They had 854 people to start and narrowed down to 778 due to some drop outs, people not following protocol, severe effects, etc. They randomized that group and ended up with 257 in the highest doseage arm, but then they divided them again in each arm to responders and non-responders. Their remission rate of 47% (a whopping 65 people) in the highest doseage arm only looks at 157 of the randomized responders! Again, it seems intuitive if you only look at the responders, your data will be pretty good. Reanalyzing this using either the 257 or the 854/778 divided into thirds gives you about 24% remission rate at 56 weeks. Not super great. Only 1 out of 4 people will get to remission with Humira. I also found it interesting that they mentioned that the most common reason for dropping out was due to adverse effects. Again, I just think people should consider all the data when making a big decision about their treatment. Here's the full Charm study:

https://health.ucsd.edu/specialties/gastro/areas-expertise/ibd-center/Documents/(G) 2007 CHARM Study adalimumab maintenance therapy for Crohn's disease.pdf

As to the 30 weeks vs. 52 weeks, Accent I only gave 30 week data, even though they ran it for 54 weeks. I wish they had given the 54 week data, since most people are on Remicade for a year or more.

In the end, Remicade/Humira are FDA approved and AMAT isn't yet, so I respect people's decision to choose the therapy that they're comfortable with, just get all the info before deciding. Personally, I've been on all three and AMAT was the only one that worked. I have other friends who have done beautifully on Humira/Remicade as well.
That makes sense to me. Still not 100% behind it given the data but I do better understand some of the confusion. Thanks for explains.
 
Hi Frozen Girl - no problem! Someone had to lead me through it as well. I read this book in college called How to Lie with Statistics, and it was all about how you could make things how you want them to look with the right presentation. What I gleaned was to be very wary of statistics! I prefer looking at raw numbers and when I read Selby, I was mad since it seemed like, at least for a few years, AMAT worked really well, but he said it didn't. Patrick McLean's talk in Chicago mentioned these statistics, so I wanted to know why the percentages seemed so different, and this is what I found.

I'm not sure which analysis is most accepted in the field, but I thought others may be interested to see what I found as well. In the end, everyone has to choose the treatment they feel comfortable with, but they can at least have a fair representation of AMAT as well as the data from other studies. It's all pieces of a puzzle,and I hope the smart researchers of the world put it together quickly, for all of our sakes!
 
Hi Frozen Girl - no problem! Someone had to lead me through it as well. I read this book in college called How to Lie with Statistics, and it was all about how you could make things how you want them to look with the right presentation. What I gleaned was to be very wary of statistics! I prefer looking at raw numbers and when I read Selby, I was mad since it seemed like, at least for a few years, AMAT worked really well, but he said it didn't. Patrick McLean's talk in Chicago mentioned these statistics, so I wanted to know why the percentages seemed so different, and this is what I found.

I'm not sure which analysis is most accepted in the field, but I thought others may be interested to see what I found as well. In the end, everyone has to choose the treatment they feel comfortable with, but they can at least have a fair representation of AMAT as well as the data from other studies. It's all pieces of a puzzle,and I hope the smart researchers of the world put it together quickly, for all of our sakes!
I agree totally. I took a basic stats class but with clinical research it is so hard to read when you throw in randomization, intent to treat and all that. Glad someone here can comprehend it. (Though they certainly do make kt very hard to see what the results really are)
 
Hi, I never reached remission on anti-MAP, fell just short and I just live with fairly mild Crohn's. I manage it and it doesn't really affect my life...but you saw how sick I was. My symptoms haven't changed in years. Treatment seems to be fine long term. I've been on it now since the end of 2011...hoping the vaccine will work :)
 
Hi, I never reached remission on anti-MAP, fell just short and I just live with fairly mild Crohn's. I manage it and it doesn't really affect my life...but you saw how sick I was. My symptoms haven't changed in years. Treatment seems to be fine long term. I've been on it now since the end of 2011...hoping the vaccine will work :)
I hope the vaccine works.
 
Thanks for your response, I am in remission with SCD diet and Lialda, but my Dr is suggesting humira as the extent of my disease is high, I am thinking to try anti map before humira as anti map works better before using anti ting

What do you suggest?
 
Hi, not being a doctor and cost aside, I would say try everything. Everyone's different and I think it's hard to accurately predict what will work and what won't. If your Crohn's is only mild I would suggest trying anti-MAP only after all the standard treatments just because it's harder to get hold of, find a doctor etc and I think its effectiveness is more significant in those who are really sick. Mild I suspect is easier to treat. If you've had responses to immune suppression in the past, I'd stay with that line of treatment. If not, anti-MAP has a fantastic success/response rate and a really good side effect profile.
 
Hi,

Per day:
-Rifabutin 600mg (split into 2 doses of 300mg morning/night)
-Clarithromycin 1000mg (split into 2 doses of 500mg morning/night)
-Clofazimine 150mg

That's all.

I'm pretty sure I could reach remission if I went back on steroids but the symptoms return once I stop and the side effects aren't worth it. I'm happy.

This is the full dose but when you start they have you ramp up to lessen the likelihood of side effects. I started on about half these doses, then after 6 weeks increased to 3/4 dose then after another 6 weeks went to the full dose. They do blood tests as well before increasing the dose just to check all is normal.
 
Hi Philn, thank you for sharing it. I am going to start the anti-map therapy in the near future and I have been somewhat puzzled by the different dose suggestions for rifabutin. Some say it is 300mg, some say it's 450mg, and some say it's 600mg. I asked about this in the support group and irishgal tried to clarify the confusion. I have the CDC's guideline for the anti-map protocol and it too suggests 600mg. Do you know anything about this issue?

These are the posts in the support group that I am referring to:
http://www.crohnsforum.com/showpost.php?p=995770&postcount=83
http://www.crohnsforum.com/showpost.php?p=995785&postcount=84

This is the CDC's guideline:
 
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Regarding side effects, do you get headaches from the antibiotics?

I know that clarithromycin causes metallic taste in mouth, does it go away or become less at some point?

Which side effects did you experience at the beginning? How did you deal with them?
 
Hi,
All I can tell you is I had the exact same dosages as you outlined in the CDD's guidelines and that was in 2011. They've never told me to change my dose in follow-ups since.

Regarding side effects:
-a tan if I spend too much time in the sun. It's summer here in Sydney now and I don't have a tan.
-a very slight metallic taste which went away but I sometimes notice it if I have a really dry mouth. It's possible I wouldn't have thought anything of it if I wasn't told about it.
-slight pink tint to bodily fluids
No headaches.
All these were really mild and nothing side effects as far as I'm concerned. The antibiotics are used for long term treatment in TB/Leprosy and have been around for 20years+.
I had mild arthralgia for the first 6 months and haven't had any since. It didn't really bother me although I was somewhat aware of it. It's very common and you probably can expect some, at least when you start. For some people it can apparently be bad and they will stop the treatment. They switched one girl I spoke to to rifampicin and it went away.

The side effect profile of this treatment is really good and I think people's stories maybe get blown out of proportion. I've been fine on a full dose of the meds for a long time and I don't even notice I'm on them.
 
Hi Phil, that's encouraging. Thanks for the detailed answers.

I hope your success continues, good luck.
 
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I have never been on humira or immuno modulator or any anti tnf medication; according to my dr. my case is severe even though I am in remission for last 1 year, is it a wise decision to jump directly to anti map with out trying the above medications.
 
Hi Philn

Great video and I appreciate the time you must have spent putting it together. It has helped me summarise and confirm my own research that I have been doing.

Next week is a big week for me as I am going to see my gastro consultant to tell him that I am starting AMAT I know this sounds a bit cocky, arrogant and bullish but I am going to do it in a charming and knowledgeable way. This is in essence a sales pitch and I am hoping to get some back up from Dr Sanderson at guys and st Thomas in London. Whether that be an email I can forward on to my consultant or get Sanderson and my consultant in touch with each other.

If my consultant doesn't want to give me AMAT then I will get myself referred to Sanderson myself.

I would prefer to have my treatment all done at the same hospital - the royal London hospital where they currently look after my kidney transplant as well.

My gastro doctors tell me they are under treating me due to all the drugs I take for my transplant. Some of them are used in Crohn's which makes changing drugs or doses a bit iffy at times when it comes to managing my kidney treatment. Therefore they want to put me on an anti tnf treatment to which I have told them no because I don't want to stop taking my anti rejection drug cyclosporine after 20 years just to try something with a 40% success rate that when working can stop after a while plus there's the side affects too! I'd much rather take my chances with AMAT treatment.

BTW has anyone else got Crohn's and a kidney transplant or similar?

The guy from Birmingham sorry I can't remember your name how did you get on?

If anyone is worried about the traveling aspect of getting treatment don't be it might be worth it. I travel at least every 3 months from Essex to the royal London hospital and although NHS funding is stretched I would say it is one of the best if not the best hospitals in the world for kidney problems although I can't say I have the same confidence in the gastro team.

Any advice guys on how I should lay out my pitch? I only will have a few minutes to get my point across as my consultant must be very busy as he is always trying to hurry up my consultations.

I will of course keep you all posted on how I get on:)
 
I saw my gastro consultant yesterday. He was happy for me to go down the route of AMAT. I didn't have to convince him or even explain about the whole process. Luckily for me he had received an email from Dr Sanderson saying he was happy to see me or let my gastro team have the AMAT treatment protocol. Both my consultant and Dr. Sanderson did however seem to think that I should still consider the other treatment option that had been previously been offered to me by my own consultant but for various reasons I still think the AMAT is probably for me.

My gastro consultant has also given me 400mg of Metronidazole for 2 weeks to help me get over the rough patch I'm having with my crohns. I had it a couple of years ago and after 2 weeks it greatly improved my symptoms probably due to its anti inflammatory effects.

I'm going to arrange a private consultation with Dr Sanderson hopefully in the next couple of weeks to discuss everything fully.

If it wasn't for forums like this I really think my Crohn's would be in control of me and not me of it so thank you to all those who have posted stuff on here that has helped with my research over the last few months, I will of course keep you all updated.

Lastly I must thank Dr. Sanderson and my gastro for their amazing speedy communication with me and each other which I never expected as I know how busy they all are.
 
I saw my gastro consultant yesterday. He was happy for me to go down the route of AMAT. I didn't have to convince him or even explain about the whole process. Luckily for me he had received an email from Dr Sanderson saying he was happy to see me or let my gastro team have the AMAT treatment protocol. Both my consultant and Dr. Sanderson did however seem to think that I should still consider the other treatment option that had been previously been offered to me by my own consultant but for various reasons I still think the AMAT is probably for me.

My gastro consultant has also given me 400mg of Metronidazole for 2 weeks to help me get over the rough patch I'm having with my crohns. I had it a couple of years ago and after 2 weeks it greatly improved my symptoms probably due to its anti inflammatory effects.

I'm going to arrange a private consultation with Dr Sanderson hopefully in the next couple of weeks to discuss everything fully.

If it wasn't for forums like this I really think my Crohn's would be in control of me and not me of it so thank you to all those who have posted stuff on here that has helped with my research over the last few months, I will of course keep you all updated.

Lastly I must thank Dr. Sanderson and my gastro for their amazing speedy communication with me and each other which I never expected as I know how busy they all are.
Glad for you. :)
 
Okay folks it's been a while since my last post but here goes:

I saw professor Jeremy Sanderson privately a couple of months ago in the Shard in London. There was almost a 2 week wait to see him but I asked to be put on a waiting list and got seen about 2 days later.

He is a very knowledgeable doctor and also has an excellent bedside manner. I would say he is probably one of the best doctors I've ever seen and I've seen alot all with their good and bad points.

He studied all my reports and blood tests and listened to everything I had to say and he was happy for me to have the AMAT as he could tell that was what I really wanted. He thought based on my type of Crohn's and his own in clinic experience that I had a 50/50 chance of this working.

As I am already being treated for my Crohn's and renal at the royal London hospital he thought it best I stay with them.

He wrote a letter to my gastro consultant with the treatment protocol. Luckily my consultant was taught by Professor Sanderson for about 3 years so there was no resistance from consultant.

My consultant then had to apply for NHS funding as even though the drugs are approved on the NHS they aren't for CD so they are classed as off label drugs.

It took almost 2 months for approval followed by blood and stool samples taken to finally receiving a 3 Month supply of all the meds (£800 worth).

So I start tonight on the new treatment. Hopefully I won't be in bed too long with the initial flu like symptoms but we shall see.

Like Irishgal I've taken metronidazole (flagyl) and I took 2 weeks supply which I had to stop when the supply ran out mid February and boy did that work! So I am hoping for a similar reaction but I do understand I'm taking haarsher drugs so i might have to be patient when it comes to seeing any improvements.

Lastly let me say if you are in the UK and badly flaring like me, don't wait the 2 months for the NHS funding, spend £400 and get 2 months supply privately until the finding comes through.

PS I'm going to start a new thread on the whole process from getting a consultant in the UK to agree to how this new treatment works out for me:)
 
Okay folks it's been a while since my last post but here goes:

I saw professor Jeremy Sanderson privately a couple of months ago in the Shard in London. There was almost a 2 week wait to see him but I asked to be put on a waiting list and got seen about 2 days later.

He is a very knowledgeable doctor and also has an excellent bedside manner. I would say he is probably one of the best doctors I've ever seen and I've seen alot all with their good and bad points.

He studied all my reports and blood tests and listened to everything I had to say and he was happy for me to have the AMAT as he could tell that was what I really wanted. He thought based on my type of Crohn's and his own in clinic experience that I had a 50/50 chance of this working.

As I am already being treated for my Crohn's and renal at the royal London hospital he thought it best I stay with them.

He wrote a letter to my gastro consultant with the treatment protocol. Luckily my consultant was taught by Professor Sanderson for about 3 years so there was no resistance from consultant.

My consultant then had to apply for NHS funding as even though the drugs are approved on the NHS they aren't for CD so they are classed as off label drugs.

It took almost 2 months for approval followed by blood and stool samples taken to finally receiving a 3 Month supply of all the meds (£800 worth).

So I start tonight on the new treatment. Hopefully I won't be in bed too long with the initial flu like symptoms but we shall see.

Like Irishgal I've taken metronidazole (flagyl) and I took 2 weeks supply which I had to stop when the supply ran out mid February and boy did that work! So I am hoping for a similar reaction but I do understand I'm taking haarsher drugs so i might have to be patient when it comes to seeing any improvements.

Lastly let me say if you are in the UK and badly flaring like me, don't wait the 2 months for the NHS funding, spend £400 and get 2 months supply privately until the finding comes through.

PS I'm going to start a new thread on the whole process from getting a consultant in the UK to agree to how this new treatment works out for me:)
I wish you the best.
 
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