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02-09-2015, 10:00 PM   #1
lenny
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Anti-MAP Therapy

Thoughts?
02-09-2015, 10:26 PM   #2
xeridea
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Seems reliable test for a clinical application are still lacking but maybe something will come up in the next year or so. MAP is a possibility, but hasn't proven out yet. Even the most ardent PRO-MAP camps, myself included, will only accede to a high likelihood possibility, but not a definite etiology for all CD cases. I have read about the Koch postulates, but still not 100% convinced. Not all Crohn's cases manifest with granulomas, ulcerations, etc. Too many unanswered questions. Best hope we have is the RedHill ongoing phase III trials to prove/disprove. The MAP Vaccine trials are still too far out to give us an answer for another couple years.

Crohn's likely doesn't have a single root cause. And definitely not an auto-immune disease. My two cents.
02-10-2015, 03:35 AM   #3
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Makes sense to me, I do think it's a good possibility. I don't think it causes all cases of Crohn's - I think they will eventually end up splitting Crohns itself into more specific categories and hopefully target treatment to each.
02-10-2015, 08:19 AM   #4
crohnsinct
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Sascot: That's exactly what our GI says. He told me they are working to identify the many subsets and types of Crohns and then working on treatment/cures specifically targeted at each. Cool stuff but very far away. So we just have to be the "p" word
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02-10-2015, 09:32 AM   #5
D Bergy
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I think most cases of Crohns involve MAP, but other infections can cause similar symptoms.

I agree that the autoimmune hypothesis is likely wrong. I do believe something alters the immune system function which allows the pathogens associated with Crohns to flourish more so than with the general population.

Since there are several pathogens that do alter the immune system, an infection could be the cause in some or most cases, yet exposure to chemicals, heavy metals, who knows what, could cause similar effects On the immune system.

I have had a lot of experience researching and treating Lyme disease. There are some people with Lyme disease that get Crohns like symptoms as a result of the Lyme disease. Borellia burgdorferri is known to weaken the immune system as it promotes its survival. There are often a couple of other infections involved that tax the immune system.

My biggest suspect in what I think might be the most common infection, that alters the immune system is the handful of harmful mycoplasma strains. For one thing, doctors rarely test for it. It is difficult to culture, yet some research does point to it as a possible player. My own amateur anecdotal evidence indicates I have mycoplasma and it causes direct symptoms along with possibly allowing other pathogens to flourish.

Dan
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02-12-2015, 03:58 PM   #6
lenny
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My husband rents an apartment 90 minutes from the one doctor in the US who is treating Crohn's this way in Las Cruces, NM.
02-12-2015, 11:00 PM   #7
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I would guess that would be Dr. Burt Berkson.

I think he had an LDN & Alphalipoic acid treatment for Crohns and some other diseases.

A very intelligent man. I would go see him if he was anyplace near me.

Dan
02-14-2015, 03:46 AM   #8
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I agree with the theory that there is more than one aetiology of this disease and hopefully as time pass this will lead to more personal targeted treatment.

In our case I canít get past a heavy leaning toward genetics and NOD2. Perhaps this defect then plays into a susceptibility to infections such as MAP, I donít know but I do know they did some extensive MAP testing on Mattís resected bowel but it came up negative. Hasnít stopped me from considering touching base with Prof Borody should the need arise in the future.

Dusty. xxx
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02-14-2015, 01:06 PM   #9
lenny
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Hmm..not much enthusiasm here.
02-15-2015, 06:55 PM   #10
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I've been tested twice for MAP. One was in a veterinary lab with lots of experience testing ruminants with johne's disease. It's a PCR test of whole blood that takes a couple of days, and culture tests that takes about 2 years, every 6 months the culture is tested for MAP. The second test was a general test of blood for presence of mycobateria, including map, less specific than the first, but capable of detecting MAP.

All of those tests were negative, yet I have classical crohn's disease of the ileum, drank lots of milk as a child, I'm the perfect candidate for the presence of MAP. Yet I don't have any according to my results.

This is very common, people with crohn's disease testing negative for MAP, neither in blood or tissue. Some people will argue it's in deeper tissue, that they should check fistulas, etc.

There's just too many studies that can't find MAP, but can detect invasive E coli for example, that it's unlikely that crohn's disease is being caused by MAP in everyone.

I really like the idea that MAP causes crohn's disease, because it makes a lot of sense, it would explain the distribution of the disease in western countries exposed to dairy, it would explain the onset of the disease that matches the onset of johne's disease, etc.

But until they can find it consistently, you can't treat people for it currently, because the antibiotics used for it need to be used for years, because MAP is a slow dividing bacteria, the antibiotics don't treat the invasive E coli that is found much more consistently than MAP but it causes the E Coli to be even more resistant.

There's a single study from Borody where he argues anti-MAP antibiotics work to treat crohn's disease. But there's a number of issues with it I feel, none of the patients were tested for the presence of MAP at any point in the study afaik, because 3 antibiotics were used it's a very broad-spectrum treatment that's not specific for MAP, one of those antibiotics used, Clofazimine, has an anti-inflammatory effect that's unrelated to it's anti-bacterial properties.

Another study that used the same antibiotics didn't see any positive results.

Also, one of the most effective antibiotics used for crohn's disease is still simply cipro, and that's not effective against MAP, but it extremely effective against invasive E Coli. How does that fit in with the theory that MAP causes crohn's disease.

Last edited by kiny; 02-15-2015 at 07:17 PM.
02-15-2015, 07:19 PM   #11
my little penguin
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We had DS 's DNA done through 23&me
Too many IBD known genes and age of onset is way too young
Ds showed signs at 14 days old
Was dx by age 7.

So while map may be for some -just not all
Not something for DS
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02-15-2015, 07:29 PM   #12
Poppysocks
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I've been tested twice for MAP. One was in a veterinary lab with lots of experience testing ruminants with johne's disease. It's a PCR test of whole blood that takes a couple of days, and culture tests that takes about 2 years, every 6 months the culture is tested for MAP. The second test was a general test of blood for presence of mycobateria, including map, less specific than the first, but capable of detecting MAP.

All of those tests were negative, yet I have classical crohn's disease of the ileum, drank lots of milk as a child, I'm the perfect candidate for the presence of MAP. Yet I don't have any according to my results.

This is very common, people with crohn's disease testing negative for MAP, neither in blood or tissue. Some people will argue it's in deeper tissue, that they should check fistulas, etc.

There's just too many studies that can't find MAP, but can detect invasive E coli for example, that it's unlikely that crohn's disease is being caused by MAP in everyone.

I really like the idea that MAP causes crohn's disease, because it makes a lot of sense, it would explain the distribution of the disease in western countries exposed to dairy, it would explain the onset of the disease that matches the onset of johne's disease, etc.

But until they can find it consistently, you can't treat people for it currently, because the antibiotics used for it need to be used for years, because MAP is a slow dividing bacteria, the antibiotics don't treat the invasive E coli that is found much more consistently than MAP but it causes the E Coli to be even more resistant.

There's a single study from Borody where he argues anti-MAP antibiotics work to treat crohn's disease. But there's a number of issues with it I feel, none of the patients were tested for the presence of MAP at any point in the study afaik, because 3 antibiotics were used it's a very broad-spectrum treatment that's not specific for MAP, one of those antibiotics used, Clofazimine, has an anti-inflammatory effect that's unrelated to it's anti-bacterial properties.

Another study that used the same antibiotics didn't see any positive results.

Also, one of the most effective antibiotics used for crohn's disease is still simply cipro, and that's not effective against MAP, but it extremely effective against invasive E Coli. How does that fit in with the theory that MAP causes crohn's disease.
The antibiotics used for anti-map make Ecoli more resistant? never heard that before.
02-15-2015, 08:11 PM   #13
kiny
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The antibiotics used for anti-map make Ecoli more resistant? never heard that before.
Yes, macrolides like clarithromycin used against MAP will create resistance against invasive E Coli found in crohn's disease patients.

I posted an article about this a while ago.

http://www.crohnsforum.com/showthread.php?t=39306

"AIEC strains from ICD (6/8 patients) versus 2/6 NI (2/5 patients) showed resistance to the macrophage-penetrating antimicrobials ciprofloxacin, clarithromycin, rifampicin, tetracycline, and trimethoprim/sulfamethoxazole."


One of the possible complications with using these drugs to treat MAP without knowing if the host actually has any MAP, is that you're creating resistance for drugs that are more specific for E Coli like cipro, which is quite effective against AIEC.
02-15-2015, 08:20 PM   #14
Poppysocks
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Yes, macrolides like clarithromycin used against MAP will create resistance against invasive E Coli found in crohn's disease patients.

I posted an article about this a while ago.

http://www.crohnsforum.com/showthread.php?t=39306

"AIEC strains from ICD (6/8 patients) versus 2/6 NI (2/5 patients) showed resistance to the macrophage-penetrating antimicrobials ciprofloxacin, clarithromycin, rifampicin, tetracycline, and trimethoprim/sulfamethoxazole."


One of the possible complications with using these drugs to treat MAP without knowing if the host actually has any MAP, is that you're creating resistance for drugs that are more specific for E Coli like cirpo, which is quite effective against AIEC.
Well, that's a pretty small sample size. But you seem very knowledgable with immunology, and I consider myself pretty informed.

Why is Ciproflaxin not used more often for Crohns patients? I've had this disease for almost 20 years and I don't think I've ever heard a GI mention it.

Also, I'm going to screen tomorrow for the Redhill biopharm map trial. Besides all of the side effects that come along with that cocktail of anti-biotics, I wouldn't be too happy to create any resistant Ecoli bacteria, especially with seeing how successful the SSi vaccine is, but that may not be available for a long time. But, I didn't even know an antibiotic existed currently to treat Ecoli in the first place.
02-15-2015, 08:28 PM   #15
kiny
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Why is Ciproflaxin not used more often for Crohns patients? I've had this disease for almost 20 years and I don't think I've ever heard a GI mention it.
It is used sparingly to treat crohn's disease and infections related to crohn's disease.

But...

-Cipro is a heavy drug, it's not something you want people to stay on, it can cause severe nerve damage like all fluoroquinolones. I have used cipro before and it gave me incredible headaches and had to stop after 2 weeks.

-Like the article above mentions, AIEC builds resistance against cipro quickly

-AIEC is capable of remaining dorment deep in tissue and macrophages and can recolonise after antibiotic use

-Cipro is a broad spectrum antibiotic that will negatively affect your gut flora, it is a disturbed gut flora that allows AIEC to colonize the gut of mice http://www.ncbi.nlm.nih.gov/pubmed/22344932
02-15-2015, 08:31 PM   #16
Poppysocks
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It is used sparingly to treat crohn's disease and infections related to crohn's disease.

But...

-Cipro is a heavy drug, it's not something you want people to stay on, it can cause severe nerve damage like all fluoroquinolones. I have used cipro before and it gave me incredible headaches and had to stop after 2 weeks.

-Like the article above mentions, AIEC builds resistance against cipro quickly

-AIEC is capable of remaining dorment deep in tissue and macrophages and can recolonise after antibiotic use

-Cipro is a broad spectrum antibiotic that will negatively affect your gut flora, it is a disturbed gut flora that allows AIEC to colonize the gut of mice http://www.ncbi.nlm.nih.gov/pubmed/22344932
What is your opinion on the the Redhill Biopharm triple anti-biotic therapy? Side effects, potential bad reactions, etc. Do you consider it safe? Do you think it is something that could negatively impact somebody in the future?
02-15-2015, 08:39 PM   #17
kiny
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What is your opinion on the the Redhill Biopharm triple anti-biotic therapy? Side effects, potential bad reactions, etc. Do you consider it safe? Do you think it is something that could negatively impact somebody in the future?
There's only 2 studies that used those 3 antibiotics afaik. I don't know how long Borody keeps patients on those, but I'm assuming years, because MAP is a slowly dividing bacteria. (which is why culture takes months, my culture took 2 years with 6 month intervals).

If I was in front of that decisions, I would at least want someone to show me I actually harbour that bacteria. The IS900 PCR test for MAP, would have to be positive before I could even contemplate thinking about going on a long term drug regime like that. I did that test, it was negative, I did 2 blood tests and another culture test and all came out negative.

Are you tested positive for MAP or do they plan to test for the presence of MAP before treatment?
02-15-2015, 08:48 PM   #18
kiny
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Do you think it is something that could negatively impact somebody in the future?
There's been 2 tests with those 3 antibiotics, and the conclusion of one where the regime failed, was that in theory it could, which is why their conclusion included caution.

I have linked that australian study a few times before, not sure I can find a link atm.

In theory those antiobics would make it harder for antibiotics that are more specific against gram negative bacteria like E coli to work.

So in theory, if your anti-MAP treatment doesn't work, and a doctor needs to use cipro for example to either treat your crohn's disease or a fistula or an infection, it could hamper it's effectiveness.

That's why most doctors are hesitant to use antibiotics long term, outside of the possible side effects, you also could leave yourself vulnerable down the line.
02-15-2015, 08:55 PM   #19
kiny
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here is the study: http://www.ncbi.nlm.nih.gov/pubmed/17570206 in the full study they have expressed caution, becuase of it's effects on E Coli

note that it was a 2 year long treatment, and it had no effect

when they added steroids, they saw short term effect, but like I said above, it isn't mentioned in the study, but one of those antibiotics clofazimine, has anti-inflammatory effects that are unrelated to it's anti-microbial effects
02-15-2015, 09:01 PM   #20
Poppysocks
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There's only 2 studies that used those 3 antibiotics afaik. I don't know how long Borody keeps patients on those, but I'm assuming years, because MAP is a slowly dividing bacteria. (which is why culture takes months, my culture took 2 years with 6 month intervals).

If I was in front of that decisions, I would at least want someone to show me I actually harbour that bacteria. The IS900 PCR test for MAP, would have to be positive before I could even contemplate thinking about going on a long term drug regime like that. I did that test, it was negative, I did 2 blood tests and another culture test and all came out negative.

Are you tested positive for MAP or do they plan to test for the presence of MAP before treatment?
I have not done any tests for MAP, and I am unsure if they plan on testing for it before treatment. I think she said they may plan on testing me DURING the treatment. Which doesn't make much sense. But, I am having second thoughts. Tomorrow is just a screening to see if I'd even qualify.
02-16-2015, 04:54 PM   #21
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If I qualify I think I will still give it a shot. I'd rather try this than Imuran.

I can always drop out if I get unwanted side effects. That's of course depending on if I get the actual medication.
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