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Crohn's Disease Forum » Books, Multimedia, Research & News » MAP Vaccine Ready for Human Trials - Could be Used for Crohn's


 
04-04-2015, 12:50 PM   #601
Himoura
 
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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.
04-04-2015, 12:58 PM   #602
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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
04-04-2015, 03:26 PM   #603
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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.



04-05-2015, 08:57 AM   #604
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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.
04-05-2015, 03:23 PM   #605
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I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed.

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

In those people however the antibiotic therapy is still a viable option.
04-13-2015, 02:41 PM   #606
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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.
04-13-2015, 03:02 PM   #607
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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
06-23-2015, 11:21 PM   #608
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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-o...rohns-disease/

The original source of this document is:
https://www.gov.uk/government/groups...rous-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...7&e=418e03b635

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IT'S TIME TO CURE CROHN'S!

Last edited by Jennifer; 06-29-2015 at 03:10 PM. Reason: Link removed as it requests donations which is against forum rules.
06-28-2015, 06:16 PM   #609
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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.
06-29-2015, 06:18 AM   #610
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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.
06-29-2015, 07:27 AM   #611
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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.
06-29-2015, 10:08 AM   #612
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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.
06-29-2015, 09:58 PM   #613
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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?
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06-30-2015, 07:56 AM   #614
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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.
06-30-2015, 12:50 PM   #615
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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.
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06-30-2015, 01:57 PM   #616
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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!
06-30-2015, 02:50 PM   #617
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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.

Last edited by wildbill_52280; 06-30-2015 at 09:31 PM.
07-05-2015, 08:47 AM   #618
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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...

Last edited by Himoura; 07-05-2015 at 09:05 AM.
07-07-2015, 06:22 AM   #619
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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/2015-0...-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. :-)
07-07-2015, 12:57 PM   #620
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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.
07-07-2015, 04:23 PM   #621
irishgal
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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!
07-09-2015, 07:35 AM   #622
Himoura
 
Join Date: Mar 2015
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.
07-09-2015, 07:54 AM   #623
Himoura
 
Join Date: Mar 2015
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.
07-09-2015, 07:57 AM   #624
InstantCoffee
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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
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Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
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Last edited by InstantCoffee; 07-09-2015 at 10:53 AM.
07-11-2015, 11:17 PM   #625
Himoura
 
Join Date: Mar 2015
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.
07-12-2015, 07:55 AM   #626
irishgal
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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.
07-12-2015, 08:27 AM   #627
Himoura
 
Join Date: Mar 2015
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!!
07-12-2015, 08:08 PM   #628
InstantCoffee
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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.
07-13-2015, 07:49 AM   #629
rollinstone
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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.
07-13-2015, 12:55 PM   #630
Himoura
 
Join Date: Mar 2015
*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.
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