Crohns Proven to be Infectious- NOT autoimmune

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/20/2017 11:55 AM (GMT -7)   
Oh my

Post Edited (NinjaQueen) : 8/20/2017 9:57:08 PM (GMT-6)


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1633
   Posted 8/20/2017 3:30 PM (GMT -7)   
LOL - I guess you didn't bother to read any of the various threads on MAP before you bothered to post this.

There might be some validity to MAP, but it's FAR from being proven.

So what non-toxic drugs did you take to eradicate MAP? Because the antibiotics required to do so are pretty darn "toxic" themselves.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3296
   Posted 8/20/2017 3:32 PM (GMT -7)   
I'm not sure if this post wants to make me laugh hysterically or cry. You aren't by chance the author of this book, are you?

We're no stranger to MAP on this forum; many of us have discussed it. And this is an international group, so if these claims were true, then we wouldn't have members on here from the UK, etc.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/20/2017 3:37 PM (GMT -7)   
DO you feel it necessary to preface your post with LOL "I guess you didn't...." DO you have to be so condescending?

It has ABSOLUTELY been prove. Read the book for $10......are you even aware of the studies and the organizations that have developed a test AND a vaccine? They have just recently been able to prove it due to new methods of detection. I understand that historically they havent been able to prove it. That is no longer the case. Its a done deal.

Yes, you are right.....the antibiotics are extremely toxic. However, there are 'natural' antibiotics, alternatives to drugs. It simply takes longer. That is what I took. That is how I healed myself, form testing POSITIVE for MAP and taking natural antibiotics along with a very strict diet. MANY others are doing the same thing.

It's sad your illness has made you so cynical. Stay sick and ignorant/arrogant.

Before you write any more

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/20/2017 3:43 PM (GMT -7)   
Nope, not the author. But it seems like instead of trying to spread something positive thats saving lives I should just run from this negative forum. I posted the info (book or no book) because just in the past year there has been a TON of progress in the scientific research regarding MAP. Its unfortunate that stagnant people such as yourselves are stuck in an old paradigm. Evenif you don't want to buy the book....do your research. The book is simply a $10 freakin summary of whats CURRENTLY going down in the MAP arena because of NEW technology.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1633
   Posted 8/20/2017 3:43 PM (GMT -7)   
LOL, this one will be fun before the mods come in and zap it!! smile

The one who is condescending is the brand-new person who comes onto a forum with members who've been here for years and have had Crohn's for many years and are all-too-familiar with MAP and the vaccine being tested...and tells them they're cynical and hopes they stay sick and ignorant/arrogant.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1633
   Posted 8/20/2017 3:45 PM (GMT -7)   
How can the book be as current as what's available online? I don't get it. The book can't be updated everyday like the web can. There are tons of sites, forums, and discussion groups dedicated to MAP that get updated all the time.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3296
   Posted 8/20/2017 4:04 PM (GMT -7)   
You're NOT spreading it to be positive. You're as much a wingnut as anyone else who claims there is a cure or a one-size-fits-all treatment for this. You refuse to address the important questions we've asked:
- Have you bothered to even read any of our other discussions about MAP? We're not discounting it, and we're glad it works for many people. But the disdain you show for us by waltzing in and assuming 1) we are ignorant enough to have never heard of MAP, and 2) your book, which is a bit ridiculous (I read excerpts of it on Amazon), is going to change the world.
- If this treatment is a cure and is everywhere else in the world besides the US, then why does Crohn's exist in the countries you mentioned? Specifically, we have several members on here from the UK who still suffer.
- What about people who try MAP treatments and they FAIL or make it worse?
- If this book has so much "scientific research" and "proof," then why aren't there citations and sources? If it was truly written by an educated doctor, why are there so many errors in grammar and sound like it was written by a middle school student?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 430
   Posted 8/20/2017 4:10 PM (GMT -7)   
I'm just here for all the lolzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/20/2017 5:29 PM (GMT -7)   
NinjaQueen said...
Turns out other countries are well aware of the true nature of CD- the US wants to keep the truth hidden


Haha. No they're not. The UK has about two docs in the entire country who's into the whole MAP thing; one of them is currently working on bringing out a MAP vaccine. Other than that, 99.9% of UK GIs use the same meds as their US counterparts: 5-ASAs, steroids, immunesuppressants, biologics. You'll be lucky if half of them have even heard of MAP, let alone give it any serious credence.

Go check out my thread on the UC board (and not just because it's me who made it ;p) That carries on a MAP discussion from an earlier, now locked, thread. There you will find links to actual studies, statistics, etc. for free. No need to pay $10 or, indeed, a single cent: I absolutely guarantee your ebook won't be saying anything that can't be found on google.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 982
   Posted 8/20/2017 7:43 PM (GMT -7)   
Yep cause I'm gonna pay 10 bucks to read a book written by a dancer who has zero actual medical training or any background in the life sciences/biology. I might as well write a book like that myself. Actually we all could since many of us have read these studies. If you really cared it wouldn't cost 10 dollars

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/20/2017 8:55 PM (GMT -7)   
You know....I regret posting anything. I"m not going to contribute to any more negativity. I had the best of intentions on here. However, I will say a few more things.

For starters, its not my book. I'm pretty sure if it was my book I would just say it was my book. My mother has read every book online on Crohn's because of me. I had already been treating my disease like it was an infection with these philosophies way before I read the book because I came across Jini Patels's website/work, who cured herself of Crohn's naturally. She has ZERO credentials, she's a stay at home mom, and she is wiser and more knowledgeable on Crohn's than any MD I"ve seen. These days, anybody can become a doctor. If you can get through medical school and regurgitate whatever they give you, you can become a doctor. Not to say that there aren't exceptions to textbook doctors- thank god there are. When my mother found his book and it seemed to summarize Jini Patel's work, Dane Johnson's work, DAve Kleins work (these are all lay people providing a service because they cured their Crohn's disease) I found it exciting and wanted to share it. I was hospitalized 3 times with Crohn's and almost died once. Of course they wanted to remove my colon and I said no. No joke, when I began treating it like an infection (like all the above people I mentioned) I got better. I have no reason to make this up.

I looked at the book again so that I could respond to a few more things:

Yup, tons of grammatical errors. The author should be notified. Does this mean that the entire content of the book is worthless? Because she's not a great writer?

There are many citations and sources at the end of the book. It is a science based book, with tons of resources. The condensed list of resources is probly the best part of the book....so that the reader can go do their own homework. The author isn't trying to write a pub med article....she comes across casual to appeal to the lay person. She doesn't seem to me to be trying to be something she's not. This'book' is not a book at all.....it's just a great summary of references and citations.

The author appears to have credentials. Nope, she's not an MD.

The author explains in detail why some patients do not respond at all to MAP treatment etc. It has to do with antibiotic resistance and often depends on how long one has had Crohn's. I think there's more about this in the book, which I read several months ago now.

I am 100% that you can find anything the book says by googling. For that matter, anything can be found googling in these times. Should we say the hell with books? Again, its not THAT book I'm promoting....I'm promoting the philosophies behind the book. The people I already mentioned have the same theories. I simply felt this book was a nice condensed format of it all, and an easy read for $10. I absolutely think the book is worth $10. There are still many people that dont even know about MAP. And given the success rate which is better than treating it with drugs and given it worked for me- I just wanted to share it.

I had zero intention of offending anyone. Of course I knew that many folks (and indeed many folks on here) were already aware of MAP. Doesn't mean there aren't new people that havent been exposed yet.

AND,

There truly is a lot happening in the MAP arena. It's exciting. There's been a lot of advancement.

All I was trying to say about other countries is that they are more on top of it right now with trying to improve food safety practices because they are acknowledging that MAP is in dairy. Of course it doesn't mean that people arent sick w crohn's in those countries.....but their governments are trying to take responsibility because the scientists have given them the real scoop. Accoding to the author, other countries are doing more. Something that is not in the book that I remember reading somewhere, can't remember where, it that one country (New Zealand?) has a MAP certification thing. meaning that when you go to grocery to buy meat, you have option of buying Certified MAP free meat, just like we have organic options here. I think that's amazing. I wish I was given that option here in the US. I avoid most meat now because of MAP and I wouldn't touch dairy if someone paid me.

If that book doesn't work for you, forget I ever mentioned it. I liked the book. Check out Jini Patel's books or Dane Johnson's site. Its all really similar. I took bits and pieces from all of them over the years. None of them are doctors. I value them more than any doctor I ever saw. My doctors simply told me to take pills. Steroids gave me some permanent damage in ways I would never dare discuss on here for fear of ridicule. This is so far from a safe place to simply discuss, that I'm never coming back. To be called a wing nut because I wanted to offer alternative information that has worked for some......

I got tired of talking to doctors who didn't give a darn, tired of waiting months to get into see whomever, tired of side effects of drugs and not getting better. So I tried something different and I don't regret it for one second. It wasn't easy.

I got better. After many years of having no life. I'm lighting a candle tonight for the eclipse and for those of you on here still ill. Sending you my deepest sympathy and well wishes for health and healing. Crohn's is unquestionably hard. I want all of you to know that I really was trying to help and offer support. I wish I would have known about the MAP theory ten years ago, maybe I would have enjoyed my twenties that I will never get back.

Peace

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1633
   Posted 8/20/2017 9:48 PM (GMT -7)   
I'm usually the first person on here to respond with snarky comments, so I'll be the first person this time to say that I appreciate your thoughtful post above.

Yeah, we came off a bunch of jerks, but you have to realize we've all been around here for years and we've seen lots of posts like your claiming miracle cures or "read this book and you'll be healed" or "follow this diet and you'll be cured" or whatever. And many of us have tried some of things things with no success. So you'll have to forgive us for coming on so strongly and denouncing your post. We've seen too much of it over the years.

It does appear that you meant well and wanted to share something you thought could help. It might be a better tactic to introduce yourself first, give a little history, get to know some posters a little, then talk more about suggestions you think might help.

If you want to have reasonable conversations about the MAP theory, you're more than welcome to stick around. We have some MAP believers here - moreso in the UC section than in the Crohn's section, but some here too. I'm skeptical myself, but I am glad there are people out there sticking their necks out and researching it. If it does turn out to be right, I'll be glad to eat crow and admit they were right.

I would caution you about using the word 'cure' around here. It's a strong word that elicits strong emotions from people who have tried so many things with no success. Some people are fortunate to experience remission for years, even decades, but the word cure implies a condition is permanently gone, and nobody knows if they are permanently 'cured' or just in remission.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/21/2017 5:15 AM (GMT -7)   
These days, anybody can become a doctor.

*anyone with 3 Grade A A-Levels in Chemistry, Biology and Maths/Physics (or equivalent in other countries), and who has spent 8 years in medical school, can become a doctor.

And before I'm accused of being a pharmaceutical shill or whatever, I'm hardly a poster child for conventional medication, as even a cursory glance at my sig should tell you. In fact failure for any of the usual meds to work is why I am showing an interest in MAP again. But I have no patience for any of the grandiose claims made about it. Treating a MAP infection isn't a cure. Preventing MAP infection with a vaccine probably won't be a cure. I'm happy to be proven wrong on the latter, but I would be surprised if I was. There's no evidence that MAP is the primary cause of Crohn's. Loads of healthy people have MAP inside their bodies but they don't get Crohn's - why? How would you disprove the notion that MAP is a secondary infection, taking advantage of a weakened immune system/'permeable' gut in Crohn's?

At the least, I hope Borody's antibiotic pill turns to be a genuinely alternative and affordable treatment. But it's early days and I'm not counting any chickens before they're hatched.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/21/2017 7:05 AM (GMT -7)   
Thank you, Beave, for the considerate post.

Nicecupoftea- Yes, doctors take those classes. I have worked in hospitals and been around doctors. Some of them have the least common sense I have (almost) ever seen and MOST of them have horrible bed side manner and really don't care about patients. They are tired, overloaded and many do it for prestige and/or money. That is my experience. I don't really care about someone being my doctor because they took those classes. I just don't. Most of them I wouldn't even want to be friends with, ever. Somehow in my last years of being really ill I switched GI's and I got the best one I'd ever had/have. I don't know how I got so lucky after 15 years of idiots and a-holes. There are good ones out there.....just rare. High IQ means very little to me. Common sense, relatability (is that a word?) and good listening skills and interest in new information outside their box is everything to me.

I apologize for using the word cure....I didn't even realize I did. What I should have said....is that I know many people with Crohn's whose lives have drastically improved when treating it as an infection. I used to run a Crohn's support group etc. And I myself can't even begin to tell you how drastically my life improved from natural antibiotics- I was never interested in pharmacuetical antibiotics.

According to the book (that I proposed) that you all have so quickly discounted most people do not get Crohn's becasuse they do not have the genetic mutation that allows for the immune system to not pick up on it. I have read a lot about that, in several places. Again, that book I believe is a really nice summary of MAP studies and resources. I don't know that I'd even call it a book, rather a resource guide. Especially for a new person. It's like MAP 101, but very current. Does anyone else know of a better summary regarding MAP for the lay person? Sure there's tons of studies/papers out there. This chick did a great job of casually laying it out there, even with some humor. She's clearly not a PHD. SO what. She's doing a good thing. She has UC. I don't know if she thinks/thought her UC is MAP. I wonder.

Yes, I should have introduced myself etc. The truth is, through all my years of being sick, I never once posted on a forum. I was too depressed. I didn't feel like anyone cared what I had to say. I would read everything people wrote. I felt numb. NOw that I have my life back I was really excited to share how I got better. I personally believe, without a shadow of a doubt, that MAP is the primary cause of Crohn's (don't know about colitis) and can be treated- especially early. After I read "wake up" I feel like my beliefs were even more rooted. I am not 100% and most likely never will be, largely because of repercussions of long term drug use. WHich is why I am f'ing thrilled to not be on drugs anymore. And why I wish for every single person with CD to get off drugs. I have to eat an incredibly strict diet to stay well and I have more discipline than most. From my experience, most people with Crohn's want to just keep eating the way they did before they got sick, and with IBD you just can't. Well, you can, if you are OK with taking drugs. I wasn't. Extreme diet, supplement regimes, and lifestyle changed my body. I am physically, emotionally, spiritually a new person.

Also, Nicecupof tea- Ms. Mullins doesn't address the secondary infection thing in her book. However, she does list sources etc that do affirm that MAP could be a secondary infection. I used that book as an almost 'go-to' guide. It's 15 pages of 'check this out.' Even having gone with the MAP theory for several years before that book came along, I did not know of some (many actually) of the resources in there. Especially wasn't aware of how many organizations are popping up with doctors and scientists studying MAP. There's a lot. There's a lot of things I didn't understand about MAP before I read that book....I'm not a PubMed geek etc. That book filled in a lot of missing pieces- for me. Maybe you guys are simply more aware, smarter and hip to all the resources in the book. If that's the case, good for you. Thank goodness there's people out there like you. I personally mostly went by Jini Pate'l MAP theory (claims of curing herself of CD) for years and she does a very poor job of explaining/ introducing MAP, she just talks about it loosely and that she rid herself of it. When I found her years ago I was ready to try anything and I didn't even care that I didn't understand or know much about it. So to me,'Wake up' is a wonderful addition for the CD community.

Yes, let's hope Borody's antibiotic pill becomes affordable. I already believe its a genuine alternative. It's not going to work for everyone- but according to some, its been more effective than drugs. Apparently it works very well if caught early on. There are natural alternatives as well.

I did hospice work for years....I've always wanted to heal the whole world. I hate how much suffering IBD brings. Its seems so unfair.

Let me just ask you guys, in an honest way- have you tried extreme diet stuff, fasting and natural antibiotics like oil of oregano/ colloidal silver? If you havent, I just am here to say that its at least worth a shot, right?

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 868
   Posted 8/21/2017 12:12 PM (GMT -7)   
i've tested positive for MAP and have taken WOO, vit A and in the past tried silver and it hasn't worked.

I will try the triple abx soon, however all abx give me horrid D. Absolutely horrid D, so I'm really very reluctant to try it. Stelara is working well but not for my fistulas.

Jini Patel suggests inserting WOO etc into recto-vag fistula.....ummmm no thanks! That's very dangerous advice to give given the burning caused by these supplements.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/21/2017 12:47 PM (GMT -7)   
My main problem with all these "natural" alternative treatments is that they definitely don't work any better than conventional medication and the vast majority probably work a whole lot worse (or not at all). An ultra strict diet might work for some, perhaps by starving out the gut bacteria that the immune system would otherwise attack. But it wouldn't work for everybody and even if it did, the diet would be so bland and unpalatable not many people would be willing or able to stick to it permanently (which you would have to, because diet, just like meds, doesn't cure Crohn's).

Anyway, I have, in the past, tried modifying my diet and even going an ultra-strict elemental diet where supposedly nothing reached the colon. As for fasting, I've been doing the equivalent of intermittent fasting for years. That made no difference whatsoever.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/22/2017 9:05 AM (GMT -7)   
U B Tough-

May I ask how and where you tested positive for MAP? I think it's great your going to try the antibiotics, its worth a shot right?

Yeah.....I have mixed feelings/experiences with suing the OOO rectally. I think the key to working with it in those ways is to dilute it a TON to where your barely using any. I do believe her protocols can be very effective- for some. Colloidal silver was my magic bullet, not OOO. I did tons of colloidal enemas. It works differently than OOO. FOr me it changed everything. I'm so sorry your flaring.

Niceupoftea-

I have had great success with alternative treatments. And I experienced the worst possible side effects from ALL drugs, way more than most, to where I functioned worse on the drugs than I did with my symptoms. If I could tolerate drugs at all and live even semi-functioning, I would. I couldn't. So it was either handle it with alternative means or die. I finally got somewhere with it.....it took a long time though.

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/22/2017 9:15 AM (GMT -7)   
Oh Also...U B Tough- did you take the store bought colloidal silver or did you make it? I got zero results from the store bought stuff, its too weak. Just curious.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/22/2017 9:45 AM (GMT -7)   
NinjaQueen said...
Niceupoftea-

I have had great success with alternative treatments. And I experienced the worst possible side effects from ALL drugs, way more than most, to where I functioned worse on the drugs than I did with my symptoms. If I could tolerate drugs at all and live even semi-functioning, I would. I couldn't. So it was either handle it with alternative means or die. I finally got somewhere with it.....it took a long time though


I dunno anything about your case, so I can't comment on it.

But suffice to say, I would have died eventually without surgery and, no, alternative treatments or diets wouldn't have saved me.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

NinjaQueen
New Member


Date Joined Aug 2017
Total Posts : 8
   Posted 8/22/2017 9:49 AM (GMT -7)   
NCOT- I'm really glad your still alive and that drugs and surgery made this possible.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10020
   Posted 8/22/2017 12:24 PM (GMT -7)   
Thanks NinjaQueen. I hope whatever you're doing continues to work for you and you can avoid surgery.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, November 22, 2017 6:13 AM (GMT -7)
There are a total of 2,896,704 posts in 317,927 threads.
View Active Threads


Who's Online
This forum has 157522 registered members. Please welcome our newest member, PamelaParker.
293 Guest(s), 17 Registered Member(s) are currently online.  Details
Marie34, Grandmacow, Spring, physedgirl09, cashlessclay, Bull101, yancync, Paxton, Sherrine, Pratoman, NiceCupOfTea, Lynnwood, JasonSinis, Works Out, MK1965, Breserv, Jack & Diane


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.