MAP Vaccine Ready for Human Trials - Could be Used for Crohn's

[Himoura]

No disrespect but your logic is flawed on multiple points to the result that some of what you did is a red flag and dangerous.

The way you went about things resulted in mistakes being made and at times cost you dearly.

While I admire your honesty in your post regarding disclosure of the mistakes, for anyone else reading it not knowing what exactly to do (that's myself included), all credibility of what you posted is ruined unless you were showing and demonstrating logic and were backing things in the post up with actual sourced data and scientific knowledge anyone reading can then verify.

I have had issues for over 10yrs now but only got really ill in aug 2012 and got diag with CD in apr 2014, so i respect if you have had it for 10yrs and your diag was then that you may know more than the rest of us that have not had our diagnosis that long. But it would be unwise for me to assume that just on the basis of how long one of us has had the condition and also years of having the condition will not ever equate to a persons ability to know subject matter.

I do respect you and your post and honestly thanks, i will take the time to go diggin about the things you cover in your post to see if in amongst the bad things that happened in your journey, there is anything that can be used to positive effect with regards to managing the condition. Will post back once i have looked into the things you covered.

Thanks again for posting and sorry you had the stumbles you did that cost you dearly.

Your a very condescending person and I don't really appreciate your negativity or ad hominem attacks. There is nothing flawed in my logic I think you just like to hear yourself sounding superior.

If you don't like what im doing then don't do it. Nobody is asking you to do anything.

 

[wellen1981]

Your a very condescending person and I don't really appreciate your negativity or ad hominem attacks. There is nothing flawed in my logic I think you just like to hear yourself sounding superior.

If you don't like what im doing then don't do it. Nobody is asking you to do anything.

Sorry you feel that way.
I had hoped you would understand the points I raised amongst my reply but also knew there was a chance you would not accept it so for any offence caused, i apologise but it was not my intent.

Sorry

 

[JMC]

As you are in london what are your thoughts on going on anti-map therapy at guys at st thomas or are you already doing it?

Yes, I am in London. I am treated at Bart's and the Royal London where there isn't any anti-MAP therapy on offer. I regularly ask my doctor (Prof Rampton) to consider MAP as the cause of my illness but he is sceptical.

Also the problem with cause of reinfection risk is that the MAP can only be attempted to be destoryed at the moment it divides and it according to those in the know, is a very resilient, slow multiplying bacteria that can take year(s) to divide and be vulnerable to destruction from the anti-map therapy.

And worse, many of the current therapies (e.g. Humira)may be just putting MAP into a dormant state which is why flare ups are common if you stop them.

What do you think about the current level of care offered in the uk fro nhs and private? Are you as disappointed as i am that patients are not able to chose a more targetted treatment at ANY nhs hospital when guy and st thomas in london are already offering it - i am faced with additional difficulty of being forced to have to travel to there if i want this treatment, utter madness and evidence the nhs is failing us patients.

All my surgery has been private which has been excellent. NHS treatment has been more variable and closed minded.

 

[Himoura]

Sorry you feel that way.
I had hoped you would understand the points I raised amongst my reply but also knew there was a chance you would not accept it so for any offence caused, i apologise but it was not my intent.

Sorry

Well I appreciate the apology but i got upset because you totally twisted my post around and tried to make it sound like I'm some crank over here doing dangerous stuff to myself and it "almost cost me dearly". Give me a break man.

Number one. The only reason I even landed in the ER at all is because I was in remission for 3-4 years and had gotten used to being able to drink alcohol and eat whatever I want. I didn't realize the bacteria was just dormant and snuck back up on me. I have had more success keeping myself in remission than anyone I have ever met or read about except the handful of lucky people who got a triple antibiotic treatment and it actually worked.

Number two. I am not doing anything "dangerous" too myself. Threelac and DE are extremely safe and I researched both incessantly before trying them. I can't even find one negative post about DE. I'm honestly just being overly cautious since there could be some really sick folks in this thread.

Number three. Honestly I think it's your logic that's flawed. I am glad for you that you feel like you have plenty of time to wait around for quality research but some of us don't feel like they have much time. "Desperate", "nothing to lose" are words I would use to describe this disease when it's in full swing. It's a nightmare. I have been suffering with Crohns for over 10 years but was only recently diagnosed. The medical community in general is just really behind the times. I had a GI tell me that if I had an ulcer the only treatment option available to me would be surgery. Really?! I asked him if he knew who Dr Barry Marshall was and he looked puzzled and said "never heard of him". He has been practicing for over 30 years. He also neglected to check my biopsy for h.pylori after my endoscopy. He said there was no need.

It's great that Dr Taylor may have figured this out. I applaud him and his daughter but most of the medical community could care less. They learn what they learn in school and that's it. They don't typically dig any further because most believe they have been taught everything there is to know about their field.

So if you feel you have plenty of time to wait for this vaccine that's awesome man I'm happy for you but a lot of us don't. The vaccine is still what... 5 yrs away?. I really didn't think I was gonna make it much longer after last year but getting the Crohns diagnosis and finding this community has really helped me to finally put all the pieces together and make sense out of what worked and what didn't and why. I think I got lucky with the three lac and it really kept my intestines from deteriorating, but it also prevented me from getting the Crohns diagnosis sooner since it's basically a diagnosis of exclusion or you get so sick it becomes obvious and requires surgery.

 

[buttER]

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.

 

[wellen1981]

Well I appreciate the apology but i got upset because you totally twisted my post around and tried to make it sound like I'm some crank over here doing dangerous stuff to myself and it "almost cost me dearly". Give me a break man.

Number one. The only reason I even landed in the ER at all is because I was in remission for 3-4 years and had gotten used to being able to drink alcohol and eat whatever I want. I didn't realize the bacteria was just dormant and snuck back up on me. I have had more success keeping myself in remission than anyone I have ever met or read about except the handful of lucky people who got a triple antibiotic treatment and it actually worked.

Number two. I am not doing anything "dangerous" too myself. Threelac and DE are extremely safe and I researched both incessantly before trying them. I can't even find one negative post about DE. I'm honestly just being overly cautious since there could be some really sick folks in this thread.

Number three. Honestly I think it's your logic that's flawed. I am glad for you that you feel like you have plenty of time to wait around for quality research but some of us don't feel like they have much time. "Desperate", "nothing to lose" are words I would use to describe this disease when it's in full swing. It's a nightmare. I have been suffering with Crohns for over 10 years but was only recently diagnosed. The medical community in general is just really behind the times. I had a GI tell me that if I had an ulcer the only treatment option available to me would be surgery. Really?! I asked him if he knew who Dr Barry Marshall was and he looked puzzled and said "never heard of him". He has been practicing for over 30 years. He also neglected to check my biopsy for h.pylori after my endoscopy. He said there was no need.

It's great that Dr Taylor may have figured this out. I applaud him and his daughter but most of the medical community could care less. They learn what they learn in school and that's it. They don't typically dig any further because most believe they have been taught everything there is to know about their field.

So if you feel you have plenty of time to wait for this vaccine that's awesome man I'm happy for you but a lot of us don't. The vaccine is still what... 5 yrs away?. I really didn't think I was gonna make it much longer after last year but getting the Crohns diagnosis and finding this community has really helped me to finally put all the pieces together and make sense out of what worked and what didn't and why. I think I got lucky with the three lac and it really kept my intestines from deteriorating, but it also prevented me from getting the Crohns diagnosis sooner since it's basically a diagnosis of exclusion or you get so sick it becomes obvious and requires surgery.

You don't have to explain yourself, again I am sorry for what I can honestly say was a very quick (read that as abrupt) post by myself that was not one of my 'better' moments of thought.
I should have took the time to just post in a decent, productive way so as not to cause as much offence to you as I did.
It was only when you replied that I realised my post fell short of what I was trying to say.

Believe it or not, you and I are in very similar positions time wise and also with regards to understanding how pressured we all are to find the best solutions to the conditions.

I don't think you are a quack. Far from it.

 

[wellen1981]

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.

From researching what Prof Borody had to say it appears that the only time the bacteria are vulnerable is at division stage and (i only watched the videos once) something along the lines of happening once a year or longer was mentioned on the videos... Borody states MAP is a very slow bacteria.

Here's the links, 9 parts about 10mins long each - I'm sorry I cant recall which part has the comments about division timeframes but i think it may be one of the middle vids maybe pt3-pt6?

https://www.youtube.com/watch?v=crm4pKz6X2M


HTH

 

[Malgrave]

Latetst news on Crohns MAP Vaccine:

On 26.02.2015 the Advisory Committee on Dangerous Pathogens met to review the issue of MAP in Crohn's disease for the first time since 2005. This review was requested by Jeremy Hunt (Secretary of State for Health) following a letter from Nicola Price (of the Crohn's MAP Vaccine core team), who wrote to him in November 2013 regarding this issue. Their report has just been published online and you can read it on our news page here:

http://crohnsmapvaccine.com/review-...ubsp-paratuberculosis-map-and-crohns-disease/

The original source of this document is:
https://www.gov.uk/government/groups/advisory-committee-on-dangerous-pathogens
You will find it under 'Minutes' by clicking on 'Minutes, papers and agendas'

Dr Irene Grant, commissioned to write the report, is a senior lecturer in Microbiology and food safety at Queens University Belfast. Whilst she maintains that 'it is difficult to draw firm conclusions about MAP in CD at present', she does highlight the following statement from Dr Ingrid Olsen (Norwegian MAP expert): 'Together with all the genetic susceptibility data emerging over the last decade, it is very hard to reject the hypothesis of mycobacteria being involved in the development of CD in at least a sub-cohort of patients'. Her report also identifies, specifically in regard to MAP testing, that 'further research is clearly needed'.

We are very pleased that an independent expert has endorsed this field as an important area of research. We note that the report does not make any recommendations as to what actions should be taken –hopefully that will be the next step!

We would also like to take this opportunity to thank Crohn's and Colitis UK and Rick Parfitt Jnr and The RPJ Band once again for their fantastic donation of £15,000 to support our project! More details are given on our latest newsletter which you can read here: http://us10.campaign-archive1.com/?u=438c2985e4a37f81f082c28e3&id=14ebca8107&e=418e03b635

***
IT'S TIME TO CURE CROHN'S!

 

[irishgal]

For anyone interested (who didn't already see my post in the research section) Dr. Amy Hermon-Taylor will be in Chicago on August 16th for a research symposium where she will discuss the vaccine. Coolest thing - you can meet her at a Meet and Greet afterward! Really looking forward to it. Other presenters are coming too, including Patrick McLean with a RedHill update.

 

[irishgal]

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.

King of Orange - I think I saw this question on another topic, so my apologies if I responded to you in a different thread. I'm not a microbiologist, so I can't fully say, but I believe it's the triple antibiotics which kill the MAP, not the TCells (since they had trouble with it in the first place.) What you describe is what I understand is the basic mechanism of a MAP infection due to genetic susceptibility in some people.

I can tell you for sure that I've had Crohn's for 25 years. The classic wasting symptoms never went away. No traditional treatment worked. In Nov. 2014 I went on AMAT as a last resort. I was in full remission in 6 weeks. Tissue that I could see was in bad shape just slowly healed. I know it doesn't work like that for everyone, but I'd certainly classify my disease as chronic, and AMAT worked miraculously for me. I was on rifampin, clarithromycin and levofloxacin, but had to drop the levo due to tendonitis. I started LDN as a compliment to AMAT a month ago.

 

[JMC]

I can tell you for sure that I've had Crohn's for 25 years. The classic wasting symptoms never went away. No traditional treatment worked. In Nov. 2014 I went on AMAT as a last resort. I was in full remission in 6 weeks. Tissue that I could see was in bad shape just slowly healed. I know it doesn't work like that for everyone, but I'd certainly classify my disease as chronic, and AMAT worked miraculously for me. I was on rifampin, clarithromycin and levofloxacin, but had to drop the levo due to tendonitis. I started LDN as a compliment to AMAT a month ago.

That is interesting, did you have any side effects from the AMAT? Were you tested for MAP infection before commencing treatment?

My resection samples were tested by Prof John Hermon-Taylor using his new test and were positive for MAP, but given that I am largely in remission at the moment I have not been tempted to try AMAT due to the bad reports I have had about the side effects and failure to improve symptoms in others.

 

[irishgal]

Hi JMC - Yes, I was tested for MAPish through John Aitken's lab in NZ and was positive. I only say MAPish because he's found a Mycobacterium involved in Crohn's disease, but it may or may not be exactly MAP. From this forum and other research I've done, MAP is able to take different forms and mutate, so it may be that it's mutated in humans from the classic MAP seen on cows with Johne's.

I did have some side affects, especially the first two weeks. Horrible nausea, felt like I had the flu, metallic taste in my mouth, no energy. Some of this was kind of normal for me though since I was so sick with Crohn's when I started AMAT. Like I said, I used it as a well researched last resort for my case since I thought it would help my particular disease pattern. I had always wondered if I had an infection throughout the years since flagyl worked wonders, but nothing else did. Now though, I hardly feel any of the side effects. Certainly nothing even as close to as bad as my Crohn's! Still occasionally nauseous, but very light.

 

[rollinstone]

Hi JMC - Yes, I was tested for MAPish through John Aitken's lab in NZ and was positive. I only say MAPish because he's found a Mycobacterium involved in Crohn's disease, but it may or may not be exactly MAP. From this forum and other research I've done, MAP is able to take different forms and mutate, so it may be that it's mutated in humans from the classic MAP seen on cows with Johne's.

I did have some side affects, especially the first two weeks. Horrible nausea, felt like I had the flu, metallic taste in my mouth, no energy. Some of this was kind of normal for me though since I was so sick with Crohn's when I started AMAT. Like I said, I used it as a well researched last resort for my case since I thought it would help my particular disease pattern. I had always wondered if I had an infection throughout the years since flagyl worked wonders, but nothing else did. Now though, I hardly feel any of the side effects. Certainly nothing even as close to as bad as my Crohn's! Still occasionally nauseous, but very light.

Hey, just wondering if your prescribing doctor has only concerns that you've dropped the one antibiotic that caused tendinitis, is it still expected to work as effectively at reducing resistance?

 

[irishgal]

I have the same concerns that it won't work as effectively without the levo, especially since my case has broken through every treatment I've tried. Now that I feel good, I never want to go back! Still, numb hands and 90 year old knees are not good. I talked to Dr. Chamberlin about this and he said that Rifampin and clarithromycin are still good and have been shown to be effective, plus I added LDN to give my innate immune system a boost. My prescribing doc wants no part of levo! Kind of can't blame her since I tried to add it back in and within three days my knees and hands were bad again. It clearly doesn't work for me.

I'm in the process of trying to legally obtain clofazimine. I need to look at off label use in the US and see if I can make an application to Novartis since all of the other treatments have failed.

 

[wild_one353]

King of Orange - I think I saw this question on another topic, so my apologies if I responded to you in a different thread. I'm not a microbiologist, so I can't fully say, but I believe it's the triple antibiotics which kill the MAP, not the TCells (since they had trouble with it in the first place.) What you describe is what I understand is the basic mechanism of a MAP infection due to genetic susceptibility in some people.

I can tell you for sure that I've had Crohn's for 25 years. The classic wasting symptoms never went away. No traditional treatment worked. In Nov. 2014 I went on AMAT as a last resort. I was in full remission in 6 weeks. Tissue that I could see was in bad shape just slowly healed. I know it doesn't work like that for everyone, but I'd certainly classify my disease as chronic, and AMAT worked miraculously for me. I was on rifampin, clarithromycin and levofloxacin, but had to drop the levo due to tendonitis. I started LDN as a compliment to AMAT a month ago.

irishgal, I also have been underweight with "wasting" since developing crohns. I did a fecal transplant 9 months ago and gained 10 pounds in 10 weeks without any change in caloric intake , it was amazing. Now
I'm a normal weight for the first time in about 7 years.

I believe a round of antibiotics caused my crohn's disease, much research supports this idea now. whiel the Fecal transplant wasnt enough to restore bacteria that regulate inflammation, i did restore bacteria that seem to help digest my food and maintain my weight. the firmicutes seem to be involved in weight gain as well as inflammation, firmicutes is a broad classification of other types of bacteria but they are generall decreased or damaged in crohn's, while in obesity firmicutes are too numerous because the baceroides are too low and allow for greater weight gain. so it may make sense that crohn's disease patients have issues gaining weight, but this is a mechanism that is beyond malnutrition that may not be well understood yet by most scientists.

 

[irishgal]

Thanks for this info Wildbill! Really fascinating. I'll have to research more. I had heard about how well fecal transplants work, but it was more of a second choice for me if AMAT failed due to availability in my area. I'm kind of in a GI dead area, and lucky to have my integrative health doc to work with.

I actually think the combo of a bad flu plus possibly being on antibiotics during that is what caused my first flare also. Plus bad genetics. I was a kid, so my mom can't remember if the doc put me on antibiotics during the flu that never went away, but my guess is that I was, which messed up my gut bacteria, which allowed bad bacteria to take over, thus kicking off my Crohn's disease and years of leaky gut. Fecal transplant is high on my list is AMAT fails.

Glad you are doing better. Isn't amazing to feel like a human again and not be so tired all the time! I know just how you felt. Really takes over your life and each day is a challenge to summon enough evergy just to keep on living. I always felt like if I didn't do the things I was supposed to do and laid on the couch instead, that the disease was winning. I guess that made me try even harder, but it's great to see what I've accomplished in the 8 months that I've been better! Also, sad to see what I could have done had I been healthy for 25 years, but I can't live life in regret. I hope you continue to feel well and the next few years will be critical for this type of research. We just need to get these projects funded!

 

[wild_one353]

Thanks for this info Wildbill! Really fascinating. I'll have to research more. I had heard about how well fecal transplants work, but it was more of a second choice for me if AMAT failed due to availability in my area. I'm kind of in a GI dead area, and lucky to have my integrative health doc to work with.

I actually think the combo of a bad flu plus possibly being on antibiotics during that is what caused my first flare also. Plus bad genetics. I was a kid, so my mom can't remember if the doc put me on antibiotics during the flu that never went away, but my guess is that I was, which messed up my gut bacteria, which allowed bad bacteria to take over, thus kicking off my Crohn's disease and years of leaky gut. Fecal transplant is high on my list is AMAT fails.

Glad you are doing better. Isn't amazing to feel like a human again and not be so tired all the time! I know just how you felt. Really takes over your life and each day is a challenge to summon enough evergy just to keep on living. I always felt like if I didn't do the things I was supposed to do and laid on the couch instead, that the disease was winning. I guess that made me try even harder, but it's great to see what I've accomplished in the 8 months that I've been better! Also, sad to see what I could have done had I been healthy for 25 years, but I can't live life in regret. I hope you continue to feel well and the next few years will be critical for this type of research. We just need to get these projects funded!

I'm aware of the role MAP may play in crohn's, its becoming obvious targeting the types of bacteria with antibiotics could have a good effect. Its still my belief that restoring the missing bacteria in IBD with a fecal transplant will provide a lasting cure, as some studies have suggested. See the fecal transplant post for more info. Restoring the good bacteria that have been damaged creates something called colonization resistance, which opposes any pathogens that we encounter. IT's a similar concept as to why fecal transplants are so effective at curing antibiotic resistant/refractory c. difficile infection, which is the only condition the FDA has approved to treat with a Fecal transplant.

 

[Himoura]

I have the same concerns that it won't work as effectively without the levo, especially since my case has broken through every treatment I've tried. Now that I feel good, I never want to go back! Still, numb hands and 90 year old knees are not good. I talked to Dr. Chamberlin about this and he said that Rifampin and clarithromycin are still good and have been shown to be effective, plus I added LDN to give my innate immune system a boost. My prescribing doc wants no part of levo! Kind of can't blame her since I tried to add it back in and within three days my knees and hands were bad again. It clearly doesn't work for me.

I'm in the process of trying to legally obtain clofazimine. I need to look at off label use in the US and see if I can make an application to Novartis since all of the other treatments have failed.

So crazy that you mentioned numb hands and 90 year old knees. These are two of my worst symptoms and I have them in exactly the way you described.

I don't want to be negative and apologize to everyone for doing so but as hopeful as I am for Dr Herman's vaccine I saw a news story about it when he first developed it. Words can't really convey how depressed I became when I saw the date of the article was 2001. They have had this vaccine for 15 years now and it's still a good 5 years away unless you can get into the human trials.

I have accepted the fact that I have to find an alternate method to stay in remission.

I think that we as a group need to promote awareness of this disease. It has recently occurred to me that most people in developed nations could have this or similar bacteria and they may simply not be showing symptoms. Anything from a post nasal drip that won't go away to common allergies or even issues with depression and drug interactions can all be symptoms. It's time for us to accept the reality that the reason this vaccine is still unavailable after so many years is because of the massive profits this could cut into of drugs like Humira that are being used to treat all sorts of inflammation that are more likely than not just symptoms of mycobacterial infections. Or even drugs to treat simple allergies. What about heartburn? Think of how much money is made off of PPI's alone.

And Why just maps? There could be many of these bacteria and the industries that are making trillions off of drugs to treat such a wide range of symptoms are going to spend endlessly to make sure this vaccine never sees an actual trial. If this vaccine is successful it opens the door to vaccines for a whole host of bacteria that could be silently affecting the populations of developed nations without their knowledge. This truly is a plague but just like with tuberculosis... some people have it and simply never get sick or than there are those who never get it at all.

And what determines Crohn's? I think it's simply a matter of the condition of your intestinal flora. The average person has about 5 lbs of bacteria in their GI track. Once the beneficial bacteria dies off to the point it can no longer keep a maps type infection in check that's when you start to see the Crohn's pathology. And with such a small segment of the population having full blown Crohn's there isn't exactly a public outcry to address the disease. Most people could have this infection and simply never know it because a healthy balance of gut flora keeps the bad bacteria from getting out of hand...

 

[irishgal]

Hi Himoura. Yes - the knees and hands really bothered me, though I think the conditioned worsened severely due to the levofloxicin. I had had issues with Crohn's related arthritis for about two years before AMAT, and the hands I just chalked up to early carpal tunnel due to risk factors. Turns out it was primarily caused by levo! I'm glad that it's gone away, but sad that I can't do the full triple cocktail of AMAT to give myself the best chance at long term remission.

My take on the vaccine is kind of along the lines of my take on life - I hope it works, but I'll have plans for while I'm waiting. Never good pin all hope on one thing that hasn't been proven in humans. I agree that the reason why all these projects haven't been funded is big pharma. They control all the research. dollars. If the vaccine or AMAT work, they stand to lose billions. The docs have finally gotten tired of waiting for the medical community to help them and have taken it to the people! See the August symposium www.thecrohnsinfection.org

The really sad thing is that Crohn's doesn't discriminate between rich, poor, people with good medical insurance who can afford the biologics or those who can't. There's a whole group of Crohn's patients who suffer because they can't afford the more expensive pharmaceuticals! For those people, you'd think that the docs would at least read up on AMAT, fecal matter transplant or any of these other treatments and try to offer those at a low cost. I was on all the expensive stuff, and what finally worked was the cheapest treatment out there - AMAT! Maybe it would work for other people!

I also think you're right that they've just barely scratched the surface of microbiome research. MAP is just one pathogen they've found so far, but I'm guessing they'll find a lot more Check out this new article about antibiotic use early in life! http://medicalxpress.com/news/2015-06-courses-antibiotics-profoundly-children.html

I do think there's a genentic predisposition for Crohn's at least in some people, and something like antibiotics could throw off the gut flora enough for an opportunistic pathogen (like MAP) to trigger the full out disease. I think this is my case. I have both genetic history plus flu trigger with early life antibiotic use. Hopefully some of these projects will get funded and we'll start learning so much more! Hope you're feeling well.

 

[Himoura]

It's important to understand why some of these medications seem to work in the short term but not in the long term. To me it's a gamble. You are basically hoping that an antibiotic can eliminate the bacteria that is causing your issues but at the same time avoid the good bacteria that is helping your body to defend itself. Their in lies the heart of the problem. Antibiotics are indiscriminate in that they do not eliminate one but all types of bacteria some more effectively than others. So you are basically hoping whatever antibiotic you take kills the bad and leaves the good. I believe in the end though that even if you experience temporary relief it could be because the harmful bacteria has simply gone dormant and all you have actually done is weaken your good flora. Once the good is gone you are totally screwed.

I definitely believe my condition was caused by over prescription of antibiotics as a child. I had tonsillitis and for whatever reason medical doctors have moved away from removing tonsils unless it becomes life threatening. This meant me being sick several times a year and having to get rounds of antibiotics every year as a kid. It eventually killed off too much of my good flora.

I'm hesitant to try AMAT because I have achieved the same results with diet, exercise and strong probiotics.

I am going to experiment with different probiotic strains to see if I can hit the one that my body is deficient in. If I can have some success than maybe fleet enemas of probiotic could be a cure.

I am really happy for wildbill but I am a total germaphobe and the idea of FMT is something I will only try as an absolute last resort. Medical science needs to get up to speed and start identifying and culturing some of the more exotic strains of good bacteria so we can just take the bacteria and not have to entertain the idea of FMT.

 

[irishgal]

Himoura, I couldn't agree more. Had I not been on deaths door with no treatment options, I may have tried some smaller scale things first. Before AMAT, I tried the traditional Crohn's meds and when those failed, I did FODMAP, yoga, heavy probiotics, cut out sugar, gluten, dairy and started some essential oils! I'd consider myself reasonably "crunchy" so broad spectrum antibiotics were a little daunting to me. All of thise other lifestyle things did work to various extents, and I still do a lot of them. I'm still taking tons of probiotics and supplements to try to combat the microbiome die off.

Actually, antibiotics are not indiscriminate and do work on different classes of bacteria. These are pretty broad spectrum, but they are targeting mycobacteria, which are nearly impossibly to kill since they go to a mutated or persistor state. Pulsing would be a bad idea in my opinion, and I'm staying on them as long as they keep working, in order to combat resistance. Still, they won't kill your microbiome, but certainly can alter the composition. I also think my Crohn's was exacerbated by antibiotics as a kid. My parents say I had tons of ear infections.

The problem I run into is which risk is worse? Risk of untreated, rampant Crohn's, or killing off a lot of good bacteria. My Crohn's was so bad that I was wasting from the inside out, so I took the risk with AMAT. I wish the diet/lifestyle route had worked for me, but after abiut a year it stopped working and my Crohn's returned with a vengeance. Plus, I have a skin manifestation, and that needed to be treated ASAP. I definitely worry about long term, but will deal with each day as it comes and have some back up plans.

FMT would certainly be a backup, but my reaction was much like yours! Still, I could probably do it if it was that or die. Hoping for a FMT pill someday! Love forums like this one so if I ever get sick again, I can pick the collective brain.

Peace and good health to you!

 

[Himoura]

ok I really cannot believe I am posting this and I am trying to be objective and not get too excited but my happy is back. for anyone that has suffered with Crohn's for a long time you know exactly what I am talking about. this disease takes everything from you and leaves you with no energy and horribly depressed.

I think I may have figured out how to cure this. really cannot believe I am saying this and I feel like a complete idiot for not trying this sooner but I am very averse to putting anything up my bum. maybe I am being extremely immature but things should only ever exit and never enter. so anyway.

I took my probiotic fivelac and bought some fleets enema's and dumped the saline solution out of the enema. I then filled the enema up with distilled water and a packet of fivelac. I did the deed right before I went to bed and slept all night. the water absorbs into the colon and the probiotic is able to begin to colonize the large intestine. I still have blocks under my bed from before I had my GB removed and had horrible heartburn. I have been sleeping backwards in hopes gravity would carry the solution further up my colon. no idea if that helped or not.

my hand inflammation is gone. two days and its totally gone. I was going into remission anyway from diet and probiotic but this is literally an almost over night thing which is shocking. my other really bad symptom is the "wasting away" that bill was talking about. its brutal. I am normally a 200 lbs. guy and I have wasted away to a meager 135lbs. I look like a cancer patient. that usually gets better over time but its been a lot harder for me to get into remission this last time.

so anyway I don't want to give false hope and I will continue to monitor and report back to this thread but if my weight dramatically increases I think this is it. its not technically an "all out cure" but if you can reinstate your bodies natural defenses than we could be like the people that have MAPs and don't know it because you don't have symptoms. also this could really help to prune the bacteria back far enough so that if you ever did get the vaccine your chances of killing MAPs would be better? idk.. that's just pure speculation.

I think FMT is very valid but idk... the idea of putting someone else's poo up my bum is insane and I don't think I could do it.

the best part about this is there is no risk. completely safe drug free solution.

 

[Himoura]

I would also add that part of the reason it has been harder for me to get into remission is because I keep cheating on my diet. starbucks is one of my biggest temptations and when I drink it I pay dearly. I had a cup of coffee yesterday and I feel completely fine. no adverse effects. I don't want to push the envelope but if this works I should be able to start eating and drinking normally with no ill effects.

 

[InstantCoffee]

I don't want to hijack this too much but I'm starting to be of the belief that MAP, though implicated in Crohn's, is not a causative factor, but moreso a marker of dysbiosis severity.

It's possible that when left unmanaged that MAP can cause symptoms, as well as the other bacteria likely to be running rampant in the gut of those with IBD and the dysbiosis it causes.

AMAP therapy would also be killing many other pathogenic bacteria, so its blanket approach would account for the improvement. I'm curious if the vaccine will have the same effectiveness. If it only targets MAP specifically or if it may be effective on multiple similar bacteria.

If it only targets MAP and shows improvement, we'll have evidence that MAP is a primary factor in Crohn's symptoms. If it's a blanket treatment like AMAP antibiotic therapy however it's not quite as conclusive.

MAP has been shown to grow based on specific dysbiosis imbalances and dietary conditions. It can also be reduced in diets higher in fibers that promote growth of healthy gut flora.

If you kill the MAP, you still need to restore normal bacteria balance to protect against it and other invasive bacteria. If the therapy to kill MAP wipes out the protective bacteria that prevent regrowth of MAP and other bacteria, you're trapped on that treatment to keep things in check.

There's a really interesting, older post by a researcher here:
Post #29
https://www.crohnsforum.com/showthread.php?t=36726

 

[Himoura]

I agree with pretty much everything you are saying coffee. I think I can also provide a very simple answer for the sacrin issue. It's just another fuel for MAPs. Oh and Coffee be careful with Humira. It has a specific warning not to take it if you have or have been exposed to TB... Well... guess what family MAPs is also a part of? Hmm...

I really do believe that Dr Taylor has the cure for this with his vaccine. He has proven it with cattle and mice. When given the vaccine the symptoms subside. It is important though like you said to restore the beneficial flora to make sure you aren't at risk for other pathogens though. But the MAPs bacteria seems to be the main culprit for the very extensive and life altering symptoms displayed by Crohn's patients and people with chronic fatigue. I think in time medical science will concede that Dr Taylor is not only correct but that MAPs is responsible for much more than just Crohn's. Could be a whole laundry list of things from regular allergies to IBS or even heartburn.

I used to have a job putting window film on houses and office buildings. I always had problems with inflammation but it was never full blown like it has been since that job. I had to breathe a soap chemical every day to put the film on the glass. I really believe this substance fed the MAPs or whatever I have I to such a huge out of control condition. It's the same with sugar. All of us know that if you eat sugar you get really sick. Why? It is fuel for the bacteria and when your beneficial flora can no longer keep it contained it spreads like a brush fire out of control. The sacrin is nothing more than a very desirable fuel source.

That's all pure speculation but it's what I have observed with my own case. Take it with a grain of salt.

So a update on my progress. I had a sandwich and another cup of coffee!!!!!! I feel fine. I really hope I can Start gaining my weight back. It's crazy to feel this good I really hope this can work for other people.

I'm praying for you guys. No one deserves to be miserable with this disease I really hope this works for any, some or all of you.

 

[irishgal]

Coffee and Himoura, you both have given me such interesting ideas! Coffee - I have to respectfully disagree that MAP only marks dysbiosis, but I'll revisit this on Aug 17th. John Aitken has some big stuff to reveal at the Chicago symposium, and my guess is that it relates to MAPs role in Crohns. Also, not exactly sure what humans have is MAP, but maybe some relative or mutation of MAP. John teases his talk at the symposium here:
http://thecrohnsinfection.org/john-aitken-reality/

Otherwise Coffee, I do worry about general issues with broad spectrum antibiotics messing up my gut flora irrevocably, which is why I'm so excited about Himoura's post!

Himoura - you've basically achieved a DIY FMT by using a mix of probiotics that worked for you instead of fecal matter. AWESOME!!!! I think the only reason people reort to full out FMT is because the beneficial bacteria contained in fecal matter are not available without the fecal portion. Clearly, I think anyone would be happy to only have the beneficial bacterial strains without the other ickyness. I've heard Dr. Borody is working on this. So glad you are feeling well!!!

I know what you mean about coffee. It made me so sick that I finally had to give it up and switch to green tea. I liked the tea, but it wasn't coffee. When I was sure I had established a healthy remission, I cautiously tried a little coffee, and was fine! I now max out a two cups a day to baby my digestive system a little, but it's wonderful to feel like a normal human again. I hope your success continues! You may try to add Saccromyces Bouladii to your mix. It's been shown to help Crohn's patients since it helps the healthy bacteria grow. Lacto Reuterii is another I take with the same effect. Klaire labs has a reliable supply.

 

[Himoura]

Ya the FMT would probably be the best because I have heard there are millions of different flora but this is easy and safe and doesn't freak me the hell out. Maybe if I had a child I would consider it but this is working really well.

I also had an interesting symptom that developed after many years. I started getting what felt like a lump in my upper GI tract and I started burping all the time. Even after a glass of water. That too is almost gone now.

Idk this is just working really well. My inflammation is almost completely gone and it's not flaring up after eating trigger foods which is a huge improvement!!

 

[InstantCoffee]

The problem I see is that while MAP is prevalent and implicated in crohn's, so are many other pathogens like AIEC, epstein-barr, klebsiella and others.

It seems more likely to me that MAP is a result of the dysbiosis than the cause.

Are there any reports of people coming off AMAP therapy and maintaining remission?

If it's a matter of just killing pathogens, then once it's dead, it's dead, although 100% killing it may take a long time.

If the MAP and other bacteria are simply the result of a loss of protective probiotics, then AMAP therapy is another bandaid similar to biologics, albeit more effective. The problem is it will disrupt your natural bacteria and make it harder to get back to a normal biome without FMT.

That's why I'd be hesitant to try it. Unless we can prove MAP is the cause - not the effect of Crohn's, I don't want to be bound to antibiotic use for life.

 

[rollinstone]

The problem I see is that while MAP is prevalent and implicated in crohn's, so are many other pathogens like AIEC, epstein-barr, klebsiella and others.

It seems more likely to me that MAP is a result of the dysbiosis than the cause.

Are there any reports of people coming off AMAP therapy and maintaining remission?

If it's a matter of just killing pathogens, then once it's dead, it's dead, although 100% killing it may take a long time.

If the MAP and other bacteria are simply the result of a loss of protective probiotics, then AMAP therapy is another bandaid similar to biologics, albeit more effective. The problem is it will disrupt your natural bacteria and make it harder to get back to a normal biome without FMT.

That's why I'd be hesitant to try it. Unless we can prove MAP is the cause - not the effect of Crohn's, I don't want to be bound to antibiotic use for life.

Dr Judith Lipton has maintained remission after ceasing anti map therapy, there are a few others, though you'll have to do some research to find their names, they don't use this forum as they've left their cd troubles behind.

Also to touch base on AIEC, the problem is that crohns is an umbrella term for what has a multitude of causes, all one needs for a diagnosis of crohns is idiopathic patches of inflammation somewhere in the intestine, both map and AIEC can cause this. The best gi's in the field are all aware that crohns itself is an umbrella term for what is most likely a chronic infection, with evidence suggesting two main culprits - Map, and AIEC.

 

[Himoura]

*Update*

I feel like a million bucks. It's. been years since I felt anything g close to this good. I just ate a sub sandwich and washed it down with chocolate milk. Am I pushing the envelope? Yes. Because I want to prove once and for all this can be cured. I have gone back to a normal diet now and even drinking chocolate milk pretty regularly.

My bowel movements actually look normal and that is a first for me in a decade. The only symptom I never really could get a handle on was a sensitivity to smells. If I can get that to go away I think this clinches it.

This is bitter sweet for me though. I lost my music, the love of my life, 10 years of my life, jobs, friends. I basically lost it all. I can't tell you how many times over the last 5 or 6 years of taking Threelac I thought about doing this but didn't. To think that all that time I had the cure right in front of me. I feel like a failure.

Whatever. That's life. You pick yourself up and salvage what's left and keep moving forward. You never give up and you never give in.

I would encourage anyone suffering with this horrible disease to give this a shot. And if this works for a lot of people I think we can conclude that good people like dr Taylor and his daughter are a rarity in an institution that has lost all focus and is hell bent on draining us of every dime.

To hell with my GI and every worthless doctor I have seen up to this point. I forge my own path in life from this moment forward.

Good luck to all of you.

 

[sid]

Its really nice to see you getting the relief finally. I hope and pray that this is actually a cure and not just a temporary remission. Keep us updated buddy.

 

[irishgal]

Coffee - there are a bunch of people who have come off of AMAT (or do a lower maintenance dose) who have achieved long term remission. I believe Dr. Borody considers 5 of them cured, including Dr. Lipton. There's a cool article written about this at beststory.ca. It costs 40 cents, but it's well worth it! The hard thing with MAP is that e people who are susceptible to it have genetic mutations, and that's not being fixed any time soon! Since MAP is in our environment anyway, it's nearly impossible to stop exposure at some points. So for those few genetically susceptible people, they'll probably end of with Crohn's anyway. Plus, once you contain it with AMAT, it mutates and forms a persistor state. That makes it nealy impossible, if actually impossible, to 100% kill it. The best we can do now is kill most of it to the point where our immune systems can handle it more effectively. I've added LDN in an attempt to make my immune system work more efficiently. It's a hard problem to solve since the organism is so hearty. I also agree that Crohn's is an umbrella term with multiple causes. Mine seems to be MAP.

Himoura, so glad you're feeling better! Understand your heartbreak for missing so many years and what you've given up being sick. I've done that too, and wonder what path my life would have taken without this disease. Keep fighting for health and moving forward. I enjoy every day I'm not sick! Coincidentally, I also am very sensitive to scent. Anything man made is overwhelming. I can only tolerate essential oils. Wonder is that's a side effect of gut dysbiosis! My family thinks I'm nuts. My high schooler hates that I can smell the girls' perfume on his clothes! Haha. As I'm getting better I'm more able to tolerate scent, but I still notice it at much lower levels than anyone else. I stripped all commercial scent out of my house when I was pregnant, and I thought it was pregnancy hormones making me extra sensitive, but it never went away! It coincides with my disease getting worse though.

 

[Himoura]

*Final Update*

this will probably be my last update and I want to be as honest as I can about what I have found. I really do think this is it but there have been some bumps.

I feel amazing. my body is going back to normal and I am hitting the gym with energy I haven't had in years. its truly a transformational experience. my personality is coming back and I feel funny again and full of life. I feel like me again.

now for the bumps. eating jersey mikes sandwich's and downing bottles of chocolate milk probably wasn't the greatest idea I have ever had but it wasn't terrible either. my stomach would get a little numb at first and some of those old feelings or symptoms would feel like they were going to come back but by that night I would feel ok and the next morning back to feeling like a million bucks. its crazy. I could never do this before. everyone who has this knows its like a downward spiral and you keep going down till you completely hit rock bottom. I even started to get a little asthma from pigging out but next day.. gone. its like my colon is being recolonized and the bad bacteria just cant keep up anymore. candida sufferers encourage each other to eat normally so the bad bacteria comes out too feed making it vulnerable to the probiotic. I would be careful with this notion but there could be some truth to it. now I am to a point where I barely get any symptoms at all.

so anyway here is what I have learned. people who think they have candida take threelac but I think its bunk now. I think its all bad bacteria getting out of control due to antibiotics. threelac can cause a person to have pretty intense die off symptoms which is good but be careful and start out with like one packet and work your way up. don't over do it. also wait on the regular food. allow your body time to heal up and the threelac to recolonize your gi track. than you can eat whatever you want. I was anxious to prove something and to gain weight because I was down so low and looking terrible barely staying in remission but not looking better.

I feel great though now and really think this is what we need to keep us going until we can get the vaccine. if you can recolonize your GI tract than you have essentially reconstituted your body's natural defense against the bad bacteria. they say 70% of your immune system is in your GI tract. in this day and age we rely way to heavily on our counts to keep us from getting sick but that's only a small part of the system. the ecology of your gut is what does most of the work and if that gets out of whack you become susceptible to all kinds of diseases and ailments.

I truly believe now that a lot of people who suffer from any type of inflammation, heartburn, headaches, allergies, chronic illness, fatigue and a multitude of other ailments can find relief through this method. the possibilities are endless.

 

[JMC]

The problem I see is that while MAP is prevalent and implicated in crohn's, so are many other pathogens like AIEC, epstein-barr, klebsiella and others.

I think if you go to Pubmed and search, you will discover a huge difference between MAP and epstein-barr, klebsiella and others. The theory that MAP is the cause of Crohn's is coherent, well researched and uniquely amongst those other pathogens has unquestionably been proven to cause inflammatory bowel disease in many other species. I think there is good evidence some Crohn's may be caused by AIEC, let's see how the Qu Biologics trial progresses.

It seems more likely to me that MAP is a result of the dysbiosis than the cause.

I think that is purely speculation as I have never seen any credible research to prove that.

If the MAP and other bacteria are simply the result of a loss of protective probiotics, then AMAP therapy is another bandaid similar to biologics, albeit more effective.

I think to some degree that is true. You can use antibiotics to try to kill MAP, but if you have a genetic weakness in your innate immune system which means you are not able to clear it naturally and it is prevalent in the environment (which it is) you will no doubt become reinfected. This is why a vaccine is a much more interesting proposition.

 

[irishgal]

Hi JMC - Don't know if you've ever dealt with John Aitken, but I sent him my sample to culture for MAPish (or red spots) as he is one of the few worldwide experts on this. I've kept in contact with him by email since then, and gotten to know him better, I know he's cautious to release anything without being 100% sure and that he's been working to ideantify the mechanism that these mycobacteria red spots (maybe MAP or a relative) play in Crohn's disease. He just posted this to the site, and the last paragraph gave me chills. I think he's got something big!

http://thecrohnsinfection.org/john-aitken-memory/

He told me this week that he's been talking with Amy, so hopefully the two of them can work together and he can possibly provide info to help with the vaccine about the organism. Glad these docs are all coming together to try to settle this debate once and for all!

I also agree that the AMAT may be a Band aid since I've been told by these docs that Crohn's is at it's core an issue of the innate immune system which lets these mycobacteria through the defenses. They're not sure if they can ever totally kill 100% of the organism with AMAT, but it certainly knocks it down to a manageable level. I've been told that a combo of both AMAT and an immune modulator may be the key, and that's what they're worki on now. The vaccine may fit in there as a prevention and treatment tool also. How I wish I could jump 5 years into the future to see where it all would shake out!

Himoura - you rock. So glad you're feeling better! Virtual high five!! Will keep your treatment in mind if mine fails.

 

[InstantCoffee]

I think if you go to Pubmed and search, you will discover a huge difference between MAP and epstein-barr, klebsiella and others. The theory that MAP is the cause of Crohn's is coherent, well researched and uniquely amongst those other pathogens has unquestionably been proven to cause inflammatory bowel disease in many other species. I think there is good evidence some Crohn's may be caused by AIEC, let's see how the Qu Biologics trial progresses.



I think that is purely speculation as I have never seen any credible research to prove that.



I think to some degree that is true. You can use antibiotics to try to kill MAP, but if you have a genetic weakness in your innate immune system which means you are not able to clear it naturally and it is prevalent in the environment (which it is) you will no doubt become reinfected. This is why a vaccine is a much more interesting proposition.

There is some conflicting evidence. Like the fact that MAP is easily cultured from animals with Johne's but hard to culture from Crohn's patients. Map typically remains active in the terminal ileum but many Crohn's patients see a migration from the ileum to the colon over time.

 

[rollinstone]

There is some conflicting evidence. Like the fact that MAP is easily cultured from animals with Johne's but hard to culture from Crohn's patients. Map typically remains active in the terminal ileum but many Crohn's patients see a migration from the ileum to the colon over time.

You'll always find arguments for and against but at the end of the day koch's postulates (the scientific criteria required to prove causation) has been fulfilled for MAP, where by they took the bacteria from a human sample and infected an animal with it (I can't remember what animal) but the animal developed "johnes"... What's tricky though is that map has been found in healthy controls as well as people with cd and also uc... I think the rhb104 trial is going to answer a lot of questions when the results eventually come in.

 

[JMC]

There is some conflicting evidence. Like the fact that MAP is easily cultured from animals with Johne's but hard to culture from Crohn's patients.

I think that has been explained though (taken from the FAQs on the Crohn's MAP Vaccine website):

"Again this comes down to the fact that Mycobacterium avium subspecies paratuberculosis (MAP) exists in 2 forms: with a capsule (the most common form in animals) and without a capsule (this form occurs universally in humans but can occur in some animals as well). The capsule stains bright red... so it is barn-door easy to see under an ordinary microscopy with ordinary procedures. Once MAP loses its capsule it becomes invisible; you can't see it with ordinary staining procedures, it is very hard to get it to grow in culture in the lab and when it does grow it can take up to 18 weeks, even with the best modern methods. You can detect it by PCR i.e. by the presence of its DNA... but to do that, you have to crack open the bug to release the DNA. The form of MAP in humans is very small and very tough so standard procedures for releasing bacterial DNA don't work; special measures are required. Research groups who haven't taken heed of this in the past have found negative results, leading to conflicting data in the literature and clouding understanding amongst the medical community."

Map typically remains active in the terminal ileum but many Crohn's patients see a migration from the ileum to the colon over time.

Do they? I have never heard that before.

 

[JMC]

What's tricky though is that map has been found in healthy controls as well as people with cd and also uc...

That is to be expected, if you look at other mycobacteria such as tuberculosis, you get a lot of people who are infected but asymptomatic.

 

[Lady Organic]

I got a question for those who believe MAp is the cause of crohns. How do you explain that there has been no case of Jones'disease in Swenden in the last 30 years, but that the incidence of CD has increased in this country? wouldnt animals still suffer from it too?

 

[rollinstone]

I got a question for those who believe MAp is the cause of crohns. How do you explain that there has been no case of Jones'disease in Swenden in the last 30 years, but that the incidence of CD has increased in this country? wouldnt animals still suffer from it too?

Does Sweden get its beef and milk from within its own borders, probably not entirely, as its very cold for a lot of the year and therefore probably doesn't make for the most ideal farming all year round, which means they could rely on importation, which in turn means there could be map infected products entering the food chain.

 

[Lady Organic]

thanks I understand what you mean.

do you know what is the general tendency incidence of MAP infections in ruminants around the world? is it increasing or decreasing?

 

[JMC]

I got a question for those who believe MAp is the cause of crohns. How do you explain that there has been no case of Jones'disease in Swenden in the last 30 years, but that the incidence of CD has increased in this country? wouldnt animals still suffer from it too?

To be able to properly answer that, you would need to know the mechanism by which people are commonly infected with MAP. Is it through milk, through drinking water, aerosols from shower water, eating beef or some other way like baby formula. At the moment, we cannot answer that question, but I agree it is an interesting point.

 

[Himoura]

Hi JMC - Don't know if you've ever dealt with John Aitken, but I sent him my sample to culture for MAPish (or red spots) as he is one of the few worldwide experts on this. I've kept in contact with him by email since then, and gotten to know him better, I know he's cautious to release anything without being 100% sure and that he's been working to ideantify the mechanism that these mycobacteria red spots (maybe MAP or a relative) play in Crohn's disease. He just posted this to the site, and the last paragraph gave me chills. I think he's got something big!

http://thecrohnsinfection.org/john-aitken-memory/

He told me this week that he's been talking with Amy, so hopefully the two of them can work together and he can possibly provide info to help with the vaccine about the organism. Glad these docs are all coming together to try to settle this debate once and for all!

I also agree that the AMAT may be a Band aid since I've been told by these docs that Crohn's is at it's core an issue of the innate immune system which lets these mycobacteria through the defenses. They're not sure if they can ever totally kill 100% of the organism with AMAT, but it certainly knocks it down to a manageable level. I've been told that a combo of both AMAT and an immune modulator may be the key, and that's what they're worki on now. The vaccine may fit in there as a prevention and treatment tool also. How I wish I could jump 5 years into the future to see where it all would shake out!

Himoura - you rock. So glad you're feeling better! Virtual high five!! Will keep your treatment in mind if mine fails.

you really should. I have almost no symptoms now. I ran 3 miles today and my knees don't even hurt from running anymore. I am gaining weight. i haven't been able to run like this in 10 years and gaining weight is a miracle. haven't been able to gain weight since i went out of remission 3 years ago.

 

[irishgal]

Himoura - SOOOOOO glad you are well! I haven't had that same experience with my healing as my bowels went back to normal, but I know what you mean about feeling like a regular human being again! Maybe someone else will have those same symptoms and this will help them. Crohn's is such an individual disease, that all the stories of what works are helpful. Thanks for all of the info and sharing your story. Hope you continue in many years of remission and good health!

 

[xeridea]

Researchers at Michigan State University have shown that ethoxzolamide, a compound used to treat glaucoma, can turn off the tuberculosis bacterium's ability to invade the immune system. This in turn may help shorten the duration of antibiotic treatment.

If TB and MAP share a similar defense mechanism against the immune system, then this drug may have applications in ABX treatment of MAP, such as Redhill's RHB-104.

 

[irishgal]

Cool xeridea! I'll have to check that out.

 

[Malgrave]

crohnsmapvaccine.com/an-update-from-the-lab-4th-august-2015/

 

[irishgal]

For anyone who is interested, Dr. Amy Hermon-Taylor's presentation from Chicago about their new MAP diagnostic is now online:

http://thecrohnsinfection.org/symposium-information/

 

[sir.clausin]

Thanks irishgirl

 

[rollinstone]

Anyone have an update on how fundraising is going? I couldn't seem to find it on their website...

 

[irishgal]

rollingstone - fundraising for the MAP vaccine or the fundraising on the Chicago symposium site? if it's the symposium site, it's in the infancy stages and being put in place now. We're redirecting any donors to the presenters websites until some type of crowd funding is put in place. I think the MAP vaccine just hit one of their targets and is ready to start trials on the diagnostic test.

 

[JMC]

It's a great talk, well worth watching
[youtube]mV9Jfytuplg[/youtube]

 

[JMC]

And this deserves more attention, what a great introduction from Dr Chamberlain
[youtube]IMS9PULY7Qo[/youtube]

 

[Lady Organic]

thx I watched the videos. Dr Amy mentions the amount of map in tissues drops when CD is in remission and also that the amount of MAP correlates with severity of symptoms, interesting....
Do we know if the amount of MAP also drops in people in remission treated with other medications ( immuno-supressants) or it remains as high? has this been tested? Logically, im thinking, an immuno-suppressant treatment would open the door to a bigger MAP infection in the long run with a weakened immune defense... any thoughts or knowledge?

 

[rollinstone]

thx I watched the videos. Dr Amy mentions the amount of map in tissues drops when CD is in remission and also that the amount of MAP correlates with severity of symptoms, interesting....
Do we know if the amount of MAP also drops in people in remission treated with other medications ( immuno-supressants) or it remains as high? has this been tested? Logically, im thinking, an immuno-suppressant treatment would open the door to a bigger MAP infection in the long run with a weakened immune defense... any thoughts or knowledge?

Well, she didn't mention that but I have talked to john Aitken (his video should be up shortly) and he mentioned that in samples he's tested with people who are on remicade, amount of map was also lower, so I assume so, but maybe he mentions it more in depth in his discussion.

 

[rollinstone]

rollingstone - fundraising for the MAP vaccine or the fundraising on the Chicago symposium site? if it's the symposium site, it's in the infancy stages and being put in place now. We're redirecting any donors to the presenters websites until some type of crowd funding is put in place. I think the MAP vaccine just hit one of their targets and is ready to start trials on the diagnostic test.

Sorry. I meant the map vaccine/ the test

 

[irishgal]

Some Crohn's therapies are effecitive against MAP as well. Here's an article about infliximab:
http://www.ncbi.nlm.nih.gov/pubmed/22398081

There are more in the Core Research Pack that deal with 6MP and 5ASA.
http://thecrohnsinfection.org/core-research-pack/

The biggest problem with MAP treatments and research is that there's never been a standard way to measure the MAP to see which patients have it, if it decreases after treatment, etc. That should change soon, and then these questions of yours can be answered!

 

[irishgal]

John Aitken's talk about Son of MAP is up! He's pretty funny. I especially love the slides about the supportive colleagues. From a micro perspective, his talk and pics are groundbreaking. No one's really been able to play with and study MAP this well until now.

http://thecrohnsinfection.org/symposium-information/

 

[Malgrave]

No one's really been able to play with and study MAP this well until now.

Except Prof. Hermon-Taylor of course, for years actually

 

[irishgal]

Malgrave - certainly we have to give kudos to Prof. Hermon-Taylor who's been doing MAP research for years, and Dr. Amy said in her video that he was successful at growing it in culture. I would never minimize their impact on the MAP research since they are also pioneers in the field!

Other researchers have certainly grown it in culture, and I wasn't trying to say otherwise, but if you watch Mr. Aitken's video you'll see he's approaching this a different way. The slides he shows are like nothing I've ever seen in published literature.

I don't view this as a competition, but rather as different research groups approaching this problem and studying it in a variety of ways, so as to provide the most knowledge and the best chance at an eventual cure. So certainly, I acknowledge Prof. John Hermon-Taylor's immense contribution to this field of research. BTW - what did you think of the video?

 

[xeridea]

I just watched the video. Thanks for posting it Irishgal. John Aitken is an entertaining presenter, and he gave a pretty informative talk about the different forms of MAP.

He kind of does a good wrap up at the end, where he says that all the researchers are looking at the problem from slightly different directions, and as the answer emerges, they will be more confident about MAP being the culprit, or admit that they were completely wrong. Seems we just have to bide our time in the meantime.

Kudos to the folks who organized the symposium and brought these researchers together. I wish them all the best of luck and hope that they can crack this nut once and for all.

 

[Lady Organic]

Some Crohn's therapies are effecitive against MAP as well. Here's an article about infliximab:
http://www.ncbi.nlm.nih.gov/pubmed/22398081

There are more in the Core Research Pack that deal with 6MP and 5ASA.
http://thecrohnsinfection.org/core-research-pack/

The biggest problem with MAP treatments and research is that there's never been a standard way to measure the MAP to see which patients have it, if it decreases after treatment, etc. That should change soon, and then these questions of yours can be answered!

on methotrexate and 6-mp :
discussion from: On the Action of Methotrexate and 6-Mercaptopurine on M. avium Subspecies paratuberculosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1779805/
:

The efficacy of both methotrexate and 6-MP in the therapy of IBD is uncontested. Prevailing dogma accepts that the decrease in pro-inflammatory cytokines that attends their use is responsible for their beneficial effect. In this study we show that both methotrexate and 6-MP inhibit the growth kinetics of MAP. In the event that IBD is eventually accepted as being due to a MAP infection, our data are compatible with our hypothesis that methotrexate and 6-MP may be impairing MAP growth. If so, the decrease in pro-inflammatory cytokines could simply be an appropriate physiological response to their antibiotic-like activity.

 

[Mother of Crohn's Teen]

I've been a member for a few years but this is my first post I was excited about the new research and I had to say something because something disturbs me. If the vaccine has taken 30 years already, it might be a waste of money. I saw Dr Chamberlains and Dr Aitken's videos, and what they have is exciting and groundbreaking. Its a no brainer for me, I would put my money when I have some with theses two guys who are going to get a nobel prize one day for their innovations of MAP and showing everyone that MAP can cause Crohn's. Dr Aitken's pictures were the defining moment for me, and listenng to Chamberlain proved to me he knows what he's talking about.

 

[JMC]

If the vaccine has taken 30 years already, it might be a waste of money.

The vaccine hasn't taken 30 years to develop, but it has taken a long time, mostly due to long periods waiting for funding to make progress. Can you explain why you think "it might be a waste of money" as that statement doesn't really make any sense to me.

 

[anti_map]

I am convinced that MAP is the cause of Crohn's disease. Why is it so hard to kill MAP? Can we use Colloidal silver to kill it? We can't suffer 10 more years. We need a cure now.

 

[irishgal]

anti_map - It's so hard to kill because it forms persisters and mutates under antibiotic stress. We can certainly minimize it's impact and may eventually be able to kill it, but like TB, it's a really tough bug! I've heard the theory about colloidal silver as well, but I'm not ready to turn blue yet. Silver may do more harm than good. Anyone have any research on silver and MAP or any mycobacterial species? Dietzia looks promising to me as well as immune modulators in combo with AMAT.

 

[xeridea]

I am convinced that MAP is the cause of Crohn's disease. Why is it so hard to kill MAP? Can we use Colloidal silver to kill it? We can't suffer 10 more years. We need a cure now.

Well, I don't know about colloidal silver, but if you want to research other alternative anti-MAP approaches, you might want to look at this. There's a veterinary medicine guy out in Texas that thinks Gallium Nitrate may kill MAP because mycobacteria are iron-dependent bacteria and GA kills such bacteria even in macrophages. Check it out

http://george-eby-research.com/html/is-gallium-nitrate-a-treatment-or-a-cure-for-crohns-disease.pdf

There are other medicinal indications for Gallium. I personally would not touch the stuff without a lot of study and research.

 

[rollinstone]

anti_map - It's so hard to kill because it forms persisters and mutates under antibiotic stress. We can certainly minimize it's impact and may eventually be able to kill it, but like TB, it's a really tough bug! I've heard the theory about colloidal silver as well, but I'm not ready to turn blue yet. Silver may do more harm than good. Anyone have any research on silver and MAP or any mycobacterial species? Dietzia looks promising to me as well as immune modulators in combo with AMAT.

I don't think dietza works with anti-map as the antibiotics kill the dietza, in fact i think that's one of the exclusions in Borody's dietza trial for that very reason. I'm trying to find out if one can take it while on remicade though.

 

[Mother of Crohn's Teen]

The vaccine hasn't taken 30 years to develop, but it has taken a long time, mostly due to long periods waiting for funding to make progress. Can you explain why you think "it might be a waste of money" as that statement doesn't really make any sense to me.

It's a waste of money because it seems that Dr Chamberlain has something even better that will pass through government approval sooner. The vaccine has not even gone through human trials even though it should have by this length of time. The test that Dr Aitken has looks much more superior and much more further along that the test Dr Taylor is trying to develop, the pictures tell it all. Dr Taylor's daughter didn't even have pictures of MAP in her presentation so they can't be very advanced with this yet.

 

[JMC]

It's a waste of money because it seems that Dr Chamberlain has something even better that will pass through government approval sooner.

Dr Chamberlain has something different to Prof Hermon-Taylor. It is closer in nature to steroids like Prednisolone and is aimed at modifying the behaviour of the innate immune system. Prof Hermon-Taylor's vaccine is a state of the art T-cell vaccine which will train the adaptive immune system to kill MAP. I agree with the words of Dr Chamberlain, the two treatments are likely to be complementary.

The vaccine has not even gone through human trials even though it should have by this length of time.

The vaccine needs to complete human trials, we all agree on that. I don't think you can make any judgement about whether "it should have by this length of time." Time provides no judgement on the value of an idea. MAP was first suggested as the cause of Crohn's in 1913, by your logic it must be totally flawed by now!

The test that Dr Aitken has looks much more superior and much more further along that the test Dr Taylor is trying to develop, the pictures tell it all.

Dr Aitken is just culturing MAP and has found a media in which to grow it. This is progress compared with previous attempts to culture MAP. Prof Hermon-Taylor's approach is quite different and a lot more sophisticated. One form of the test was completed about 3 years ago, in the intervening years he has been improving the test and growing the monoclonal reagents needed to make the test highly specific. I don't think you know enough about what has been done and what remains to be done to make a judgement on which test is "further along", so it is probably best you don't make such pronouncements in public.

Dr Taylor's daughter didn't even have pictures of MAP in her presentation so they can't be very advanced with this yet.

That is not correct. Prof Hermon-Taylor's daughter did not present images at the Symposium because the test is the subject of a patent application and you cannot publicly disclose that information before the patent is granted. I have actually seen both sets of images (Aitken's and Hermon-Taylor's) and I know which ones are superior in term of detail and new information.

 

[irishgal]

Hi Mother of Crohn's Teen - I understand your frustration with how long the vaccine is taking. I think you're in good company there! Some people don't have time to wait since they are so sick now. The Hermon-Taylor's and John Aitken (and many other MAP researchers) are approaching the general problem of MAP from different sides. Until all the options are tested, we can't know for sure which one will work. I think back to 20 years ago and what was being offered to me when I was first diagnosed. It was pretty much prednisone or azulfadine. There wasn't even an Internet to do research with! And now the researchers have discovered so much more and the MAP research looks quite promising. The symposium was about collaboration and everyone putting aside their differences to achieve a much more important goal: to let the patients know about this new research. I think if the researchers in this field can work together, so can we.

We may all have preferences and opinions about which treatments will work the best for our individual cases, but above all we should thank the researchers who have decided to devote their lives to help us. Wouldn't it be great if all the ideas worked and could be used in combo to finally give us the hope of a cure!

Most of you know that I had my sample cultured by John Aitken, and I was quite pleased with the result and information I got. (Not pleased I had MAP, but pleased I had some proof to take to my doctor and direct my treatment!) I also met Dr. Amy at the symposium and thought she was a lovely person. Her father's article was what got me started on MAP in the beginning, which has eventually led to remission for me. I hold them in high regard for the lifetime of work they've done with this line of research. I'm a micro person, so I preferred to do the culture, and it was accessible. Others, like JMC, have had access to the vaccine group's lab for testing and have been happy with their experience. In even 5 years, we should have an answer, and it may be something no one has discovered yet! I'm willing to reserve judgment until all of the studies are done.

Rollinstone - I'd guess AMAT and Dietzia would be mutually exclusive, but Remicade may work in conjunction with Dietzia. However, because Remicade has some MAP killing effects, I wonder if that would exclude it. I just don't know enough about exactly how Dietzia works to guess with reliability, though I know the general idea. I hope Dr. Borody keeps on it and does a larger study! Let me know if you find out anything.

 

[xeridea]

The more researchers, the merrier, I say. There's currently about 80 clinical trials underway studying different therapies for Crohn's, bring on more.

Besides, because it's not yet definitively proven that MAP is the cause of Crohn's, it's good to have as many smart minds on the subject as possible. (Even MAP researchers attribute 50-60% of CD cases to MAP).

In my opinion, the biggest development with all this MAP research is creating a reliable, clinically accessible test, not so much the actual treatment. Redhill already has one they licensed from UCF (here's patent if interested in details.) that I think they're using in their trials, Prof. Hermon-Taylor's test seems to be in patent filing stages and should become available in a year or two, and then I learned recently that John Aitken has come up with some secret sauce medium within which he can culture MAP fairly quickly. Add to this PCR testing and you potentially have a handful of tests you can use.

Once MAP is proven as one known culprit, and we have a clinically accessible tests, then treating it becomes a much easier job. You can fall back to abx cocktail therapies or you can go the vaccine route. Prof. Hermon-Taylor's CMV is a good start, but there's been some pretty amazing advancements on the vaccine development front, many of which were significantly accelerated during the Ebola epidemic. If MAP is proven the be the cause in a significant proportion of CD patients, you may likely see additional vaccines developed, especially because this is a predominantly European and North-American disease, incidence is rising in youth, and ongoing care is so expensive for it.

 

[JMC]

Prof. Hermon-Taylor's CMV is a good start, but there's been some pretty amazing advancements on the vaccine development front, many of which were significantly accelerated during the Ebola epidemic. If MAP is proven the be the cause in a significant proportion of CD patients, you may likely see additional vaccines developed, especially because this is a predominantly European and North-American disease, incidence is rising in youth, and ongoing care is so expensive for it.

Did you know that the Oxford Clinical BioManufacturing Facility that made one of those Ebola vaccines is also making the Crohn's MAP Vaccine.

Other vaccines have already been developed, though they have focused on treatment of Johne's disease in cattle. I mentioned it previously here: http://www.crohnsforum.com/showpost.php?p=809495&postcount=4

 

[Nicola Price]

"In my opinion, the biggest development with all this MAP research is creating a reliable, clinically accessible test, not so much the actual treatment. Redhill already has one they licensed from UCF that I think they're using in their trials, Prof. Hermon-Taylor's test seems to be in patent filing stages and should become available in a year or two, and then I learned recently that John Aitken has come up with some secret sauce medium within which he can culture MAP fairly quickly. Add to this PCR testing and you potentially have a handful of tests you can use."

Professor Hermon-Taylor's test is a rapid test that will only take 15 minutes, using existing lab equipment. Very accessible.

 

[xeridea]

Did you know that the Oxford Clinical BioManufacturing Facility that made one of those Ebola vaccines is also making the Crohn's MAP Vaccine.

Other vaccines have already been developed, though they have focused on treatment of Johne's disease in cattle. I mentioned it previously here: http://www.crohnsforum.com/showpost.php?p=809495&postcount=4

Hi JMC, yes, I recall you had mentioned this facility was involved in Ebola vaccine production.

What I was thinking about in particular though was Inovio. They have a method whereby they synthetically design T-Cell vaccines based on the DNA of the pathogen. They analyze multiple strains of the pathogen and apply advanced algorithms to derive DNA signatures that don't naturally occur, but are shared by all the strains. This way they formulate a universal vaccine against that pathogen. They also have devised a novel delivery mechanism that improves the uptake of the vaccine by the target cells by an order of magnitude. The manufacturing process is also very high yield and does not require mammalian cell cultures. They believe they can produce vaccines against cancers, viruses, and other pathogens using their technology. It's fascinating stuff. The Ebola tie-in here is that this company has been awarded multiple grants by DARPA for the strategic significance of this technology, the most recent, during the Ebola outbreak last year.

 

[irishgal]

Dr. Chamberlin's Immunikas and EpiBro talk is up! Dr. Amy and the MAP vaccine are next.

http://thecrohnsinfection.org/symposium-information/

 

[mf15]

http://thecrohnsinfection.org/dr-william-chamberlin-fepibro/



here is what the compound is 16-bromoepiandrosterone

http://thecrohnsinfection.org/dr-william-chamberlin/



it is an analog of DHEA, DHEA and DHEA-S are elevated in babies and seems to decrease in adulthood,

but it varies with age

that's what I gather from this paper, read last paragraph.

http://aac.asm.org/content/46/10/3180.full.pdf



Come to think of it I was taking DHEA at least 20 years ago, orally for immune modulation



the bromo form is synthetic.


DHEA IBD trial,

http://www.ncbi.nlm.nih.gov/pubmed/12562454


cant find anymore trials on dhea, makes you wonder if cheap treatments work,then follow up

somehow gets killed off. Also remember that in this trial these people were refractory to meds.


Then I have to wonder if plain old DHEA might also be having and effect on MAP like the bromo version.


When I took it pretty sure was not using 200mg.

a few more abstracts on dhea and mycobacteria
http://www.ncbi.nlm.nih.gov/pubmed/26099547
http://www.ncbi.nlm.nih.gov/pubmed/24963545
http://www.ijvm.org.il/sites/defaul...fects_of_dhea_and_aed_december_book_en1-3.pdf

Caution can have many side effects

http://www.mayoclinic.org/drugs-supplements/dhea/safety/hrb-20059173

Old Mike

 

[irishgal]

Amy's vaccine talk is now up on TheCrohnsInfection.org, along with lots of other interesting content all about MAP.

http://thecrohnsinfection.org/symposium-information/

 

[xeridea]

Amy's vaccine talk is now up on TheCrohnsInfection.org, along wi lots of other interesting content all about MAP.

http://thecrohnsinfection.org/symposium-information/

That was a good presentation by Dr. Amy. I like that she mentioned some of the timelines, with 2017 phase 2 probably being the pivotal year for proving out the vaccine. I also like that she put an initial price tag. I'm always interested in the numbers. It'd be interesting to see how that plays out financially if/when the trials show positive results.

That last question from the audience was a bit harsh, I think the guy was referring to molecular mimicry and questioning whether introducing the MAP DNA signature in the vaccine will invoke an auto-immune reaction. But that's what the Phase 2 trials will sort out.

 

[irishgal]

xeridea - there was a point in the questions at the end where another audience member answers the original audience question, and they start talking back and forth. It was really hard to hear, but facinating to see the level of intelligence even in the audience members. Clearly, the one gentleman was in the medical field. He asked another question of Dr. Rubin, and I remember Dr. Rubin called him the vector guy! I think his main issue was how the vaccine would be build without using an adenoviral base, or something like that.

 

[rollinstone]

Video is on private for me anyone else having the same problem?

 

[irishgal]

rolinstone - we had an issue so had to temporarily pull it. We're working on it and I'm hoping it should be back later today. Sorry for the inconvenience!

 

[Himoura]

Has there been any news on the availability of the test for MAPs? I understand from the video that the first human clinical trials will begin in Q1 2017. That's still over a year away. I would really like to be able to take the MAPs test and get confirmation so that when the vaccine does become available I can hopefully acquire it.

 

[irishgal]

Himoura - you can get a MAP test now via John Aitken's lab. I had one done prior to starting AMAT and he gave me detailed info on the type of MAP I had. Email him via his contact page at http://www.otakaropathways.co.nz.

 

[AJC - Australia]

Irish Gal, how are you going on the AMAT? Is that an anti boitic against MAP?

 

[irishgal]

Irish Gal, how are you going on the AMAT? Is that an anti boitic against MAP?

I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now. I'm on clarithromycin and rifampin. I was originally also on levofloxicin, since a triple combo is the best way to achieve long term remission, but the levo gave terrible joint side effects. I'm looking at adding clofazimine as a third antibiotic, but it's harder to get. I went from barely being able to get off the couch I was so sick to complete remission. It took about 6 weeks for me to feel like things were healing well, and then it was another 3-4 months before I gained all the weight back and had consistently normal bowel movements.

I helped with the Chicago Symposium since the docs who had helped me were speaking there, and I was so mad my doc never even gave me the option of AMAT! It doesn't work this miraculously for everyone, but it has a consistently better remission rate than any other Crohn's treatments. Here's the Chicago symposium website which gives a lot more info and contains all the AMAT info you need to get started with your doc, including the videos from the symposium.

thecrohnsinfection.org

 

[xeridea]

I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now.

That's fantastic to hear, IrishGal, may your remission be long-lived. Are you also on LDN in addition to the antibiotics? I'm curious because it's listed as one of your support groups.

 

[JMC]

I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now. I'm on clarithromycin and rifampin. I was originally also on levofloxicin, since a triple combo is the best way to achieve long term remission, but the levo gave terrible joint side effects. I'm looking at adding clofazimine as a third antibiotic, but it's harder to get. I went from barely being able to get off the couch I was so sick to complete remission. It took about 6 weeks for me to feel like things were healing well, and then it was another 3-4 months before I gained all the weight back and had consistently normal bowel movements.

I helped with the Chicago Symposium since the docs who had helped me were speaking there, and I was so mad my doc never even gave me the option of AMAT! It doesn't work this miraculously for everyone, but it has a consistently better remission rate than any other Crohn's treatments. Here's the Chicago symposium website which gives a lot more info and contains all the AMAT info you need to get started with your doc, including the videos from the symposium.

That's really interesting and wonderful that you achieved such profound remission. Due to generally pretty good, but not perfect, health I have thus far not tried the AMAT. I also know of others who have tested positive for MAP and become more unwell after taking the antibiotics, so it is a tough call. It's good to hear about the success stories though and fingers crossed many more come out of the RHB-104 trial.

 

[irishgal]

Hi xerida - yes I'm on LDN as well. I tried to add a signature which would list my meds, but I'm a but tech challenged! In any case, I added it when the levo failed. I was worried about being on just two antibiotics since some studies showed a greater chance at relapse, plus I'm worried about building MAP superbugs. Figured the LDN couldn't hurt while I was trying to get clofazimine, and Dr. Chamberlin told me he had patients use it in combo with AMAT and it worked beautifully. It has low side effects and my body is used to it now, so I don't notice anything.

JMC - I agree that most people don't have the miraculous recovery on AMAT like I did, but many of them tell me they get a bit better, and sometimes it takes longer than in my case. It's certainly not a risk free therapy (a friend of mine got an obstruction!), and I agree that if you're feeling well on something else, no need risk it. Hopefully you'll never need it, but at least it's an option if you do! I always like having a back up plan that I hope I'll nevere need. Very excited about the RHB-104 trial as well and getting antsy to get some results, which I'm guessing are a ways off still.

 

[Himoura]

I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now. I'm on clarithromycin and rifampin. I was originally also on levofloxicin, since a triple combo is the best way to achieve long term remission, but the levo gave terrible joint side effects. I'm looking at adding clofazimine as a third antibiotic, but it's harder to get. I went from barely being able to get off the couch I was so sick to complete remission. It took about 6 weeks for me to feel like things were healing well, and then it was another 3-4 months before I gained all the weight back and had consistently normal bowel movements.

I helped with the Chicago Symposium since the docs who had helped me were speaking there, and I was so mad my doc never even gave me the option of AMAT! It doesn't work this miraculously for everyone, but it has a consistently better remission rate than any other Crohn's treatments. Here's the Chicago symposium website which gives a lot more info and contains all the AMAT info you need to get started with your doc, including the videos from the symposium.

thecrohnsinfection.org

This is exactly how I would describe my recovery. Constantly pinching myself because I can hardly believe I am having normal bm's and I have almost gained all my weight back. My inflammation is almost gone I guess it's been about 2 months so I figure by about 4 months I should be in complete remission.

The reason I was asking about getting tested is because I am not sure if I will ever be able to go off this treatment and if I did how long would it take for me to slip back into Crohn's. Idk. The thought is scary. I feel like I have a better chance of staying in remission because the method I am using involves rebuilding the ecology of the GI track rather than suppressing bacteria so I am rebuilding my bodies natural defense.

I can pretty much eat whatever I want now but I still try to eat a lot of fiber and drink water to keep things moving. I believe slow digestion and leaky gut is what causes the inflammation and allergies or sensitivities.

My treatment isn't expensive only about $60 a month USD but it would be very nice to be completely cured and be able to cut that expense all together.

I am running 5k's at just over 22 or 23 min. Can hardly believe it and my Joint pain is almost completely gone although I still have cracking and popping. Really hoping that will go away and I am still young enough to heal up.

 

[irishgal]

Himoura - SOOOO ridiculously happy that you are well!!! :rof: I bet you could still have John test you and see if you have MAP. Maybe it's not your issue. While I believe most Crohn's patients have it, there could be other bugs that could cause similar issues, like AIEC. Whatever it is, your method seems to be doing the job! I'm also worried about long term antibiotics, but it's a better alternative now than long term, uncontrolled inflammation where I'm just wating for the one rogue cell to turn into small bowel cancer.

Good for you for curing yourself. Keep us posted!

 

[irishgal]

Also, there's bonus footage from the Chicago Crohn's MAP symposium! At the last minute, world renown gastroenterologist Dr. David Rubin, from the University of Chicago medical Center, gave a presentation. He talks about MAP, the microbiome, how he got started as a GI and what he sees for the future of IBD. Lots of great info!

http://thecrohnsinfection.org/symposium-information/

 

[Himoura]

Himoura - SOOOO ridiculously happy that you are well!!! :rof: I bet you could still have John test you and see if you have MAP. Maybe it's not your issue. While I believe most Crohn's patients have it, there could be other bugs that could cause similar issues, like AIEC. Whatever it is, your method seems to be doing the job! I'm also worried about long term antibiotics, but it's a better alternative now than long term, uncontrolled inflammation where I'm just wating for the one rogue cell to turn into small bowel cancer.

Good for you for curing yourself. Keep us posted!

Your very quick to rush to the conclusion of "Crohn's may not be your issue" but I think that's the wrong mindset to have. Our symptoms are basically identical. Have you ever met someone else that is sensitive to smells? That's a very one off symptom. Combine that with the bowel problems and inflammation and cracking and popping joints and food sensitivities and dramatic weight loss and I think it's fairly safe to assume we have the same thing.

Stay on your treatment by all means it seems to be working for you but also consider there is simply more than one way to tackle a problem. Also recognize the problem for what it is. Dysbiosis. Plenty of people could have maps and show no symptoms. Dr Taylor has proven this with cattle very substantially. Why? It's probably because the good bacteria in the gut is keeping it at bay. If they had the antibody's to kill it there would be no maps.

 

[irishgal]

Hi Himoura - Just to clarify, I think Crohn's is your issue from what you've said, but maybe it's not MAP, though you do make a good point about our symptoms being ridiculously similar. I think those food/smell sensitivities and joint issues were due to leaky gut in my case. Without a MAP test, it's hard to know if you have it. I do think MAP is at the heart of most Crohn's disease, and there are probably multiple ways to treat that; AMAT being the most researched one, but your method seems to work as well. I'm not convinced Crohn's is general gut dysbiosis though. Dr. Borody makes the point about general antibiotics which affecting the microbiome not helping Crohn's patients. It's only when they target MAP that they see an improvement. Is it possible that there's another sneaky pathogen like MAP which coincidentally is killed by AMAT - sure. I think some people walking around with a MAP infection show no symptoms because they haven't been triggered yet - so maybe the gut microbes keep it in check to a point, but when you introduce a course of standard antibiotics that kill off some of the good bacteria, the MAP takes over. No one's really worked all that out yet, but I'm glad they're at least looking at it!

The point of my post to you was, YEAH!!! You're better!!! I'm so happy for you. Although I'd love to know the exact mechanism of how AMAT is working to make me well, there's a point where I'm just grateful it is, and hope that it lasts long enough for them to figure it all out. Trust me, your method is probably next on my list if I relapse!! I'm grateful for people like you who post things that have worked so there are backup plans, but I feel so good I'm not messing with anything now!

 

[Himoura]

This is why the test is so important. There are millions of bacteria in the gut so there is no way to know for sure.

My entire immediate family has this. Dad, mom, grandmother and all three of my brothers. We all grew up on a farm with several cow pastures all around our property. So I would be extremely surprised if it wasn't but who knows. Especially considering my first cousins live about 20 min down the street from us in a rural area that doesn't have any pastures or farmlands and none of them have it. I know that isn't scientific at all but that's why the test is so important.

This isn't just about me I would really like to see my entire family recover from this. My dad has already undergone major surgery and had part of his colon removed. He had a colostomy bag for months. I'll do anything to avoid that.

 

[Crohn2357]

I do think MAP is at the heart of most Crohn's disease, and there are probably multiple ways to treat that; AMAT being the most researched one, but your method seems to work as well.

Hi, I probably read it but can't remember now, what is his/her method?

 

[JMC]

This is why the test is so important. There are millions of bacteria in the gut so there is no way to know for sure.

There are millions of bacteria in the gut, the vast majority of which are completely harmless. Looking for a cure to Crohn's by studying the microbiome, as Aitken put it, is like opening a phone directory and randomly dialing numbers in the hope that you will call your wife.

As a scientist by education, it genuinely concerns me that this sort of research is attracting attention and funding as it has all the traits of bad science. It's great if you are a career scientist looking to attract funding for the rest of your career, but terrible if you are a patient waiting for a cure as it is never going to narrow down to a solution.

 

[irishgal]

Exactly what JMC said. Why not eliminate the prime suspect (MAP) like Dr. Amy said in her talk, before looking around for another!? It's certainly maddening for patients who truly want the scientific data about MAP regardless of the outcome. They studies needed just aren't funded, and then you ask yourself, why? Hmmmm, maybe because there's a ton of money in the antiTNF market that would be wiped out, or maybe the beef/dairy lobbies are blocking it. Clearly something we don't know behind the governments' decision to ignore MAP for years past when it should have.

Himoura's treatment (who can augment or correct me) is something like using threelac as an enima kind of like a do it yourself fecal matter transplant, but with probiotic strains instead of fecal matter. I truly hope it keeps working and your family can get some relief. How awful that must be for all of you to be sick! Interesting about the farms. I'd heard that people on farms may actual have natural resistance to MAP, but clearly that wasn't the case in your situation. I had an ileostomy bag for a while and it was terrible. Avoid at all costs! Again, glad you are well!!!!!

 

[Himoura]

There are millions of bacteria in the gut, the vast majority of which are completely harmless. Looking for a cure to Crohn's by studying the microbiome, as Aitken put it, is like opening a phone directory and randomly dialing numbers in the hope that you will call your wife.

As a scientist by education, it genuinely concerns me that this sort of research is attracting attention and funding as it has all the traits of bad science. It's great if you are a career scientist looking to attract funding for the rest of your career, but terrible if you are a patient waiting for a cure as it is never going to narrow down to a solution.

Which is exactly why the method I have come up with (a spin off of the FMT method) is one I believe has the greatest chance to keep a person in a remissive state regardless of what type of bacteria is ailing them and produce the greatest long term outcome.

If you want to get over this you have two choices. Rebuild the good bacteria in the gut which will reconstitute your body's own natural defense (which accounts for 70% of the immune system) or try to kill it with an antibiotic approach which will ultimately harm good bacteria as antibiotics are I indiscriminate.

Do whatever works I am not advocating one method over another just pointing out the options and putting an alternative to drugs and antibiotics on the table. I have and will achieve complete remission with zero drugs.