# Association of MAP with Crohn in children



## kiny (Aug 1, 2012)

can access full text in link now

http://journals.lww.com/jpgn/Fulltext/2011/02000/Association_of_Mycobacterium_avium_subspecies.13.aspx

*OBJECTIVES:*

The aim of the present study was to determine the prevalence of Mycobacterium avium subsp paratuberculosis (MAP) DNA in intestinal biopsies from pediatric patients with granulomatous Crohn disease (CD) or ulcerative colitis (UC), and matched control subjects without inflammatory bowel disease (IBD).

*PATIENTS AND METHODS:*

DNA was extracted from formalin-fixed paraffin-embedded colonic and ileal biopsies from patients with CD (n = 22) or UC (n = 20), and from controls without IBD (n = 21). IS900 nested polymerase chain reaction was performed in triplicate to determine the presence of MAP-specific DNA.

*RESULTS:*

In mucosal biopsies from terminal ileum, IS900 amplicons were detected in 1 of 19 (5.2%) control subjects, 1 of 20 (5%) patients with UC, and 7 of 20 (35%) patients with CD (P < 0.05 vs controls, odds ratio 9.6). In colonic biopsies, IS900 amplicons were detected in 0 of 19 control subjects, 1 of 19 (5.2%) patients with UC, and 5 of 19 (26.3%) patients with CD (P < 0.05 vs controls, odds ratio 14.8). In patients with CD, there was no correlation between disease activity and the presence of IS900.

*CONCLUSIONS:*

Our technique enabled sensitive and specific detection of MAP DNA in archival endoscopic biopsy specimens. Although MAP-specific DNA can be detected in about 5% of intestinal biopsies from children with UC or controls without IBD, its presence was significantly associated with pediatric granulomatous CD, being particularly prevalent in ileal tissue. This easily defined clinical subset of patients may be useful for additional studies to determine the role of MAP in CD.


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## Tenacity (Aug 1, 2012)

I just read the entire text.  The evidence has been there for so long, it is so frustrating that more advancement has not been made.  I would love to find out from everyone if their gi doc has ever tested them for MAP, E Coli or H Pylori?

The 1st time I ever suspected a link between Crohns and MAP was back in 1997 - its just so sad that they have not figured the whole thing out by now.


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## Jennifer (Aug 2, 2012)

Why E. Coli when it clears up on its own? Most GI docs run fecal tests to rule out things like that. It'd be gone by now.

As for H Pylori, that should have been spotted also since it can also be found in blood work, stool samples and even an endoscopy. Who hasn't had these tests done? Were the GI docs checking for it is the real question though right? They weren't testing for Crohn's right away in my area. They tested for everything else because they didn't even think to test for Crohn's in my area since I was the first case they had. This bacteria is common in children so I'm sure they would have tested for it. 

I'll talk to my GI about MAP but from what I've read, there's no simple test for it.


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## kiny (Aug 2, 2012)

Crabby said:


> Why E. Coli when it clears up on its own? Most GI docs run fecal tests to rule out things like that. It'd be gone by now.


Not sure what you mean but I have to correct you here.

E Coli is a broad term, there are hundreds of E Coli strains, many harmless who live inside our GI tract.

On the other hand there are invasive E Coli implicated in crohn's disease, to be more precise, Adherent-invasive Escherichia coli, they do not clear themselves from the GI tract on their own at all, they are able to manifest themselves in deep mucosal layers and are able to survive inside macrophages and currently the only way to kill them has been through macrophage-penetrating antibiotics in vitro. (that's why they're called _adherent_)

(to be fair, there are other ways to kill invasive E Coli in vitro, but none of them seem feasible, because you want to destroy the invasive E coli but you don't want to destroy the GI tract, some essential oils might help, but you would have to get them to hit the exact spot and if they're taking orally they would need to be enteric coated and even then they don't know if it would help at all, but it has to be safe too)

About the MAP test, the test is not that easy you are right, the test shold be for DNA through IS900 PCR, culture is also possible, but it can take months and some labs don't know how to culture it properly. Naser et al does a really good job of culturing them and uses nano sensors to spot them, I don't know what he does exactly, but he's one of the few people to get positive results where others can't.


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## Jennifer (Aug 2, 2012)

kiny said:


> Naser et al does a really good job of culturing them and uses nano sensors to spot them, I don't know what he does exactly, but he's one of the few people to get positive results where others can't.


This is curious and sounds fishy in general. Can he not teach others or does he choose not to? Is it all faked? What do you think since you've been studying this at length?


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## kiny (Aug 2, 2012)

Crabby said:


> This is curious and sounds fishy in general. Can he not teach others or does he choose not to? Is it all faked? What do you think since you've been studying this at length?



In the middle east they have a different method of detecting bacteria, they use centrifugation and other methods that has some advantages over western techniques depending on the bacteria I believe. He's familiar with that.

He works at the University of Florida now and licensed his technique: http://today.ucf.edu/ucf-licenses-bacteria-test-for-possible-crohns-treatment/

There is nothing fishy about his technique really, he has it documented and he has written many papers about it, he is simply really good at detection compared to other labs who are newer at it.

Here is a paper of his: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0035326


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## Moe. (Aug 2, 2012)

No offense butting in. But the world ur money. He's patented his approach. He's in a agreement with a big pharma in Israel who are producing rhb04. Also known as myconda.
But what Hermon Taylor has is better. It's able to pick MAP strains out of a blood test. He has been working on a DNA vaccine for sometime now. I'm sure in. Ten years crohns will be history.


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## kiny (Aug 2, 2012)

Moe. said:


> No offense butting in. But the world ur money. He's patented his approach. He's in a agreement with a big pharma in Israel who are producing rhb04. Also known as myconda.
> But what Hermon Taylor has is better. It's able to pick MAP strains out of a blood test. He has been working on a DNA vaccine for sometime now. I'm sure in. Ten years crohns will be history.


Everyone is going to patent their product though, you can't get something to market without patenting / licensing it in this day and age, if Hermon Taylor finds a type of vaccine he too will patent it. Look into any pharmacy and all of those products on the shelves are licensed.

I don't doubt that some people will make money from it, but that doesn't really make me doubt their efforts in any way at this point, John Herman Taylor is familiar with Naser.

I don't want this topic tarnished in any way either, I don't want to sidetrack to a discussion about money or something.


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## Tenacity (Aug 2, 2012)

Here is a small but interesting study.  To detect the rate of viable MAP infection in Crohn's disease, UC, and a group of healthy individuals.  After 18 months,  MAP spheroplasts were only found in every single CD patients, one UC, and none of the non-IBD control patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945487/

When they say MAP spheroplasts, they mean wall-deficient cells.  These bacteria can hide in the host's cells, and are extremely hard to detect.  The host will get sick not from the cell itself, but from the inflammatory response from their immune system trying to destroy it.

It makes me wonder if anyone says that they tested negative for MAP - how accurate was the screening procedure??  Did they try to grow cultures?  Probably not.


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## SCD+LDN (Aug 31, 2012)

My daughter is blood culture was positive for MAP.  We used the lab of the Johne's Testing Center -University of Wisconsin.  It took 15 months for the bacteria to grow.  We're meeting with local Infectious Disease Specialists next week and our Gastroenterologist is willing to collaborate if she ever needs antibiotics.  

I hope she will never need the antibiotics as she has been symptom free with normal labs for 2 years- I believe due to her being on SCD.  It could also have helped that she initially had 3 infusions of Remicade.  (We stopped after a severe anaphylactic response.)


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## kiny (Sep 2, 2012)

Don't remember what study it was, but if you take human MAP antigen, from people with crohn's disease, and infect goats with it, the goat will develop johne's disease.


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## SCD+LDN (Sep 2, 2012)

Kiny you may be referring to Koch's postulates fulfilled establishing MAP as a causal agent of Crohn's Disease in Chiodini study:

Van Kruiningen, H.J., Chiodini, R.J., Thayer, W.R., et al. (1986) Experimental disease in infant goats induced by a Mycobacterium isolated from a patient with Crohn’s Disease. A preliminary report. Digestive Diseases and Sciences, 31, 1351-1360.


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## kiny (Sep 2, 2012)

ty


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## Tenacity (Sep 2, 2012)

I believe I posted somewhere before, about the Phase II/III trial currently underway in Houston, Texas - led by Dr. David Graham, and the European Phase III trial that is being done to investigate the MAP bacteria being treated with RHB-104 for Crohn's.

Prof. David Graham, MD, RHB-104 Lead Investigator said today: "I am delighted to have been appointed as lead investigator for RedHill Biopharma's upcoming RHB-104 US pivotal trial. I am impressed with the Company's drug development team and enthusiastic about testing RHB-104 in the contemplated trial. For more than 25 years we have worked toward finding the cause of Crohn’s disease. Finally, we will be able to directly test a drug which may prove the hypothesis that one of the causes for the disease is MAP infection. The opportunity to support the development of this revolutionary drug is extremely compelling and I am hopeful that RHB-104 will benefit Crohn's patients around the globe." 

Hopefully, they will finally make some headway with this treatment - it is long overdue!

http://www.businesswire.com/news/ho...opharma-Appoints-Key-Opinion-Leader-Professor


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## ctrl z (Sep 2, 2012)

This is exciting! No more dark, Biologic cloud hovering over head. :smile::smile::smile::smile:


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## ellie (Sep 3, 2012)

kiny said:


> Don't remember what study it was, but if you take human MAP antigen, from people with crohn's disease, and infect goats with it, the goat will develop johne's disease.


Wow, to me that seems really significant!


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## SCD+LDN (Sep 3, 2012)

Ellie- it IS significant.  Interesting:
"Robert Koch was one of the original researchers into tuberculosis, in the 19th century, and was the first to succeed in isolating the organism from tuberculosis patients.

In an attempt to define what an infectious disease actually is, he formulated his famous postulates, which now bear his name.
Basically, if
1. An organism can be isolated from a host suffering from the disease
and
2. The organism can be cultured in the laboratory
and
3. The organism causes the same disease when introduced into another host
and
4. The organism can be re-isolated from that host
then
The organism is the cause of the disease and the disease is an infectious disease.

There is an implicit assumption in step three, namely that the other host must have a genetic make-up that causes it to react to the organism in the same way as the original host.
Also, these steps do not apply to all infectious disease. Notably, the bacterium causing leprosy, Mycobacterium leprae, cannot be cultured in the laboratory. However, leprosy is still recognised as an infectious disease."


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## mreyn (Sep 3, 2012)

Can someone point me to a dr I can contact who is willing to test for this and knows how to do it properly.. when I mentioned it to our gi nurse, she bascially humiliated me and said no one in the 26 years she's been nursing has ever had that. I need a dr who is willing to test for map, and other bacteria. My son had a lot of other symptoms that really makes me think there is something else going on. Thanks


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## SCD+LDN (Sep 3, 2012)

mreyn- When I mentioned the possibility of MAP to our GI, he dismissed it saying if it were a pathogen like MAP, she would have responded to the antibiotics.  (He didn't know at the time that Flagyl is not effective for MAP.) 

So I found a local MD who is an alternative doctor- treats a lot of children with Autism-and he was happy to approve it.  He had his nurse draw the blood, package it, and we mailed it via FedEx to the leading MAP researcher in the world:
Johne's Testing Center
UW Madison - School of Veterinary Medicine
SVM 2015 Linden Dr.  RM# 4230
Madison, WI  53706
608-263-6920
johneslab@svm.vetmed.wisc.edu


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## kiny (Sep 3, 2012)

Even if the association is not causative, it is irresponsible for anyone not allowing testing at this point, since not only is MAP seen in many people with crohn's disease, it:

-helps with diagnosis of CD
-as the study points out, it defines a specific subset of people with CD infected with MAP who might have to be treated in a very different way than those who do not have it (same goes for OmpC testing and other tests)


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## kiny (Sep 3, 2012)

SCD+LDN said:


> mreyn- When I mentioned the possibility of MAP to our GI, he dismissed it saying if it were a pathogen like MAP, she would have responded to the antibiotics.  (He didn't know at the time that Flagyl is not effective for MAP.)


This is why GI like that are irresponsible and imo liable. When someone uses a non-macrophage penetrating antibiotic like Flagyl, they will create resistance if someone has MAP or AIEC (I linked a study showing extremely high AIEC resistance after Flagyl use). In any other infectious disease, that doctor would lose his license.


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## kiny (Sep 3, 2012)

*Multidrug resistance is common in Escherichia coli associated with ileal Crohn's disease.*







This is the study, it's in full if you anyone wants to read it somehwere.

That study details the extremely high resistance non-macrophage penetrating antibotics like Flagyl and Rifaximin can create when they use cipro or clarithro after.

If someone uses Flagyl and creates resistance and was unwilling to check for pathogens before use of Flagyl, that doctor is responsible and should lose license.


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## mreyn (Sep 3, 2012)

does anyone know of a dr who would perform the blood tests and/or can provide treatment if diagnosis comes back map?


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## mreyn (Sep 3, 2012)

AND how expensive is the testing? Thanks


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## Tenacity (Sep 3, 2012)

mreyn,

Yes, I can help you.  I noticed you live in Texas.  Anywhere near Houston?  This following doctor is in charge of a clinical trial, testing people with Crohn's for MAP and using a drug to combat it.

Professor David Graham
Baylor College of Medicine
Houston, Texas

Tell them you are enquiring about being a candidate for the RHB-104 trial.

http://www.businesswire.com/news/ho...opharma-Appoints-Key-Opinion-Leader-Professor

Let  us know what they say please.


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## mreyn (Sep 3, 2012)

Thank you! I am several hours away from Houston. Maybe I'm just grasping but I just really feel like somethings missing here. I'm going to repost what I posted in a facebook crohns group looking for someone who might have an answer.

 I've been researching and have found that there are many other things that are similar to crohns. The scopes they did from his top to bottom showed : inflammation, friability, erythema and ulceration in the ileum and ulcer at ileocecal valve. All of the biopsies came back no histopathologic abnormalities. Here is what came back biopsies of these two: Gastric body showed mild chronic gastritis , gastric antrum showed chronic gastritis. The biopsies of the gastric body and antrum show mild to moderate expansion of lamina propria due to lymphoplasmacytic infiltrate. No active inflammation or infections organisms seen.

There are several other symptoms he had previously which I'm making a chart of to give to his new d.o. and to the new g.i. just to make sure nothing was overlooked. like we had a puppy who nearly died who had giardiasis, and my stepdad had h. pylori bacteria

In the year or so prior to getting diagnosed he would have bouts of what we thought were 24 hour virus with vomiting, diarrhea, fever and then he would be fine. He also would get these weird little red spots on his chest/back when he wore those shirts with the holes all in them. He started getting really tired, and low grade fevers alot of afternoons/evenings. He would throw up sometimes when he was eating or right after. And We had been swimming in the lake the year before.

He also had problems with blood in his urine and mouth ulcers.. I found something about vasculitides like this one::: Dr. William Heberden, a London physician, described the first cases of Henoch-Schönlein [ Hee? nock - Shirn? line ] purpura (HSP) in 1801. In describing HSP, Heberden wrote of a 5-year old boy who “…was seized with pains and swellings in various parts…He sometimes had pains in his belly with vomiting…and the urine was tinged with blood. Presently, the skin of his leg was all over full of bloody points” (purpura).


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## mreyn (Sep 3, 2012)

has the rhb-104 helped others who have map? Or is it just being tested to see what results may be?

From a brief glance it looks as though he may be given a placebo?

IF that's correct, is there anywhere that would actually treat him with this if he has map? He's been through so much and I hate to subject him to unnecessary procedures and something that he may not even be receiving medication.


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## mreyn (Sep 4, 2012)

I read somewhere that map treatment is clarithromycin, ritabutin and levoflaxacin, is that different than rhb-104? I can't find the link where I found that information about the 3 together, if anyone knows, please send it. Thanks


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## kiny (Sep 4, 2012)

There is no real standard antibiotics treatment for MAP. There are a number of macrophage-penetrating antibiotics that have the ability to destroy MAP, the ones you named, and others like rifampicin, azithromycin, clofazimine, etc.

A MAP antigen response doesn't mean it's an infection. Antigen response does not always imply infection, it can but it does not have to be. A Japanese research team managed to induce necrotizing and full thickness collitis in mice with lesions that looks exactly like Crohn's disease because of the antigen response related to _heat killed MAP_.

http://www.ncbi.nlm.nih.gov/pubmed/22486997

They find MAP PCR DNA in Crohn's disease, but the lesions are still different from paratuberculosis, missing granuloma reaction (sometimes CD has no granuloma reaction they can find, sometimes it's skip granuloma, Ptb has granuloma all over), and he can stain the paratuberculosis samples, but he can not stain the crohn's disease samples. But there is still a high antigen response to MAP. So the team thinks it's an antigen response instead of infection, namely to heat killed MAP. And they tested it on rodents and they have a better resemblance than PTB.

PCR would still detect DNA, even though it's _heat killed MAP_ response.

People are exposed to heat killed MAP all the time, because of pasteurisation and other methods, pasteurisation is not able to kill all MAP but high temp do produce heat killed MAP.

None of those studies imply it is an infection in the traditional sense, they see an antigen response, it's not the same thing, all they see is DNA with the PCR.

If he's right, then those antibiotics would probably have a different effect, and why they work might be because they're simply limiting exposure of gut flora or other bacteria like AIEC to the lesion caused by the MAP antigen.


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## Igor_Passau (Sep 4, 2012)

Hi, 
I contacted this doctor. He is one of the leading in MAR theatment.
Everyone can contact him. He is open and could theat you using 3 antibiotics. I deceided to test this antibiotics in Kyiv with my doctor but I could not buy this clofazimine! Via Internet could not! My friend in USA also could not buy it without doctor prescription! in Europe and Russia also impossible to buy it! 

http://www.crohnsforum.com/showthread.php?t=37773


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## Igor_Passau (Sep 4, 2012)

Dr William Chamberlin!

PS: You are welcome to come to Billings, Montana where I will be able to treat you.

If I were lived in USA.... But I lived in Ukraine and to came USA I need visa and 11 hours by airplaine....


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## mreyn (Sep 4, 2012)

I have a few questions... first, I posted some of my sons other symptoms because it just seems like something is being missed. I'm not sure if you can  see all of my posts by looking up my name, but if you can, if anyone knows more about all of this than I do, please see what you think. I have found other things it may be than crohns due to all of his symptoms considered together.    

Also, I do have access to a local medical doctor who uses natural therapies, supplements, etc to get the body to heal itself. We had started a program with him, but they are extremely expensive, I think it was about $700 for one visit and 2 months of supplements.... BUT if that's my best bet, I'll try my best to stick with it.  

Does anyone know of the success rate to "cure" or "heal" completely using the map protocol?

Thank you all so much, your help is appreciated more than you could know.


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## kiny (Sep 4, 2012)

Antibiotics isn't curing people atm, it's getting them in remission. (there have been a handful of cases where it did "cure" people, they became completely symptom free and have remained symptom free).

MAP reproduces really slowly, which means it takes very long to kill MAP in any significant numbers. It also doesn't mean that because antibiotics against MAP are effective that it's because of their ability to kill MAP. Many of them are broad spectrum, they would prevent immune response against a commensal bacteria in the gut flora or other pathogenic bacteria like AIEC, TB,  H. Pylori , Yersinia, etc. There is a HUGE list of bacteria that can create the symptoms of crohn's disease, some they can't test for yet very well, others that are not considered by doctors, some that are false negatives because people were on an immune suppressant in the past. There's a lot of reasons to suggest that crohn is not merely one disease, even the study this topic is about shows this, crohn could be multiple undiagnosed disease with clinical similarities.

Part of the critique against some studies is that some didn't test for immunoglobulin MAP response before and after treatment, but then does it matter if people get better.

If MAP is not an infection in CD , but is an antigen response from heat killed MAP(as the Japanese study proposes), then antibiotics against MAP wouldn't be effective against MAP antigen, but because almost all of them are broad spectrum, you could still see people getting better, since you're reducing bacterial load to the lesion.


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## patrickdwayne (Sep 19, 2012)

kiny said:


> can access full text in link now
> 
> http://journals.lww.com/jpgn/Fulltext/2011/02000/Association_of_Mycobacterium_avium_subspecies.13.aspx
> 
> ...


Thanks for the information


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## acheallova (Sep 19, 2012)

I was able to get my clofazamine after 2 months of waiting. If anyone needs the address and phone number to the pharmacy, let me know. It is somewhat of a pain, but seems to be going fairly well thus far .


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## Igor_Passau (Sep 19, 2012)

I need clofazimine! send me address and phone number to the pharmacy! Thank you!


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## acheallova (Sep 19, 2012)

*clofazamine available*

Northwest  Pharmacy - Canada
Northwestpharmacy.com
Phone: 866-539-5330
Fax: 866-539-5331
After trying multiple pharmacies this one finally came through!  :thumright:
You will need a prescription. You call them first, set up an account, then they'll have you fax in the script. Once they verify it they will notify you and ship it out. Wallaw, you have it!


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## Igor_Passau (Sep 19, 2012)

What about e-mail? we have 10 hours different! so e-mail will be more appropriate!


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## acheallova (Sep 21, 2012)

I couldn't find it, but if u google the pharmacy they might have one listed under contact info???


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