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


 
04-01-2015, 10:24 AM   #31
wellen1981
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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
04-01-2015, 04:55 PM   #32
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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!
04-04-2015, 12:01 PM   #33
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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!
04-04-2015, 02:01 PM   #34
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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.
04-04-2015, 05:13 PM   #35
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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?
04-04-2015, 05:37 PM   #36
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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..
04-04-2015, 05:50 PM   #37
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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.

Last edited by wellen1981; 04-04-2015 at 06:08 PM.
04-04-2015, 06:20 PM   #38
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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.
04-04-2015, 06:26 PM   #39
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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.
04-04-2015, 06:30 PM   #40
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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!
04-04-2015, 07:01 PM   #41
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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!

Last edited by wellen1981; 04-04-2015 at 07:34 PM.
04-05-2015, 03:10 PM   #42
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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.
04-05-2015, 03:13 PM   #43
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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?
04-05-2015, 04:07 PM   #44
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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.
05-25-2015, 03:38 PM   #45
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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
05-26-2015, 11:31 AM   #46
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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!
05-27-2015, 01:59 PM   #47
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∑ Stoma
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!
05-27-2015, 10:28 PM   #48
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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!
06-01-2015, 01:45 PM   #49
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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..
06-10-2015, 07:51 PM   #50
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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.
06-11-2015, 05:33 AM   #51
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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. :-)
06-14-2015, 02:53 AM   #52
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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
06-14-2015, 07:34 AM   #53
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PhilN, Will PM you.
06-27-2015, 10:24 AM   #54
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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! :-)
09-06-2015, 09:56 PM   #55
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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: '' ¬ Infection with Yersinia enterocolitica or Mycobacterium tuberculosis can cause inflammation in the terminal ileum resembling Crohnís 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...
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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

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
09-07-2015, 08:35 AM   #56
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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!
09-07-2015, 06:57 PM   #57
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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.
09-07-2015, 07:13 PM   #58
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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.
09-07-2015, 07:26 PM   #59
Lady Organic
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Location: Quebec

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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!
09-07-2015, 07:54 PM   #60
irishgal
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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.
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