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MAP virus and UC theory that won't go away

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Posted 5/27/2012 7:08 PM (GMT 0)
I know that it's controversial (and has been discussed before) but it does make me question why a triple antibiotic therapy against MAP wouldnt be at the very least standard protocol prior to resorting to surgery.

An interesting part of this theory is how they consider crohn's and UC just different expressions of MAP infection, based on aged of onset, degree if infection, etc.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031217/pdf/1757-4749-2-21.pdf
Posted 5/27/2012 9:13 PM (GMT 0)
Is MAP not checked for during any stool sample testing??

q
Posted 5/27/2012 9:13 PM (GMT 0)
I personally believe that Map or a type of E-Coli caused all of our UC or Crohn's. As we discussed before you do not even have to eat beef or use dairy to get it. It could be in lettuce, spinach, fruit, water... We could get sick just from a chef's unwashed hands in a restaurant. We especially are vulnerable if our immune system is weakened by antibiotics.
I find it interesting that the antibiotics "open the door" to this infection and it could be the possible treatment too. Unfortunately many times antibiotics can do more harm than good by killing too much of the good bacteria together with the bad one, and this can lead to C-Diff ....
I think if a person seriously thinking about a surgery, it is a good idea to try the triple antibiotic therapy before cutting anything. As soon as the person finishes the antibiotic therapy start on a very high dose of probiotics, in order to restore the good bacteria as much as possible.
That therapy should include not only lactic acid bacteria (like VSL) but also soil based ones, like Prescript Assist. This kind of bacteria can survive the stomach acid easily without the special coating. By the way VSL does not have the protective coating, so not many of the VSL bacteria making to the colon, where it is needed. By the way Dr. Ohhira's probiotic formula, even though does not have high # of bacteria, has the ability to survive in the stomach and actually make it to the colon. Plus it was fermented for 3-5 years to make the different strains of bacteria very strong and capable to get along with each other.
Posted 5/27/2012 9:19 PM (GMT 0)
jeepers....what would be an initial trigger could very well be cured such as MAP or c.diff or e.coli....but the eventual result of those of us who is left with UC or CD isn't. Why is that such a hard concept for people to not understand?

If it's still there and treated and cured, can they not possibly be mimics of UC? If they're cured and the UC is left....it's still UC (how your body reacted eventually to the assult).

q
Posted 5/27/2012 9:22 PM (GMT 0)
@Quincy- good question, I was wondering that myself. Am going to see if my Gp can rx me an MAP test, if one is available. The virus is present in a very large segment of populationd in developed countries, so interpreting test results may be tricky, of course, but a positive would at least provide some rational basis for considering triple antibiotic therapy.

@lookforcure- agreed, antibiotic therapy could be risky indeed. On this forum, of course, there have been some poster children for its success e.g. C_G_K as I recall... Right now, I am considering Xifaxan/refaximin because its non-systemic, and internally topical to the gut, so it seems the risk of it backfiring would be minimal- but good suggestions re strains that can survive the stomach and small gut transit.
Posted 5/27/2012 9:49 PM (GMT 0)
Here is what I was tested for:
Salmonella, Shigella, Campylobacter, Aeromonasspp., Plesiomonas shigelloides and E. coli 0157 (I have a copy of my test results, including colonoscopy).
I do not see MAP (mycobacterium paratubercolosis) and they only tested for 1 E. coli strain-0157. How about other E. coli strains, like 0145?

Read this article from USA Today:
http://www.usatoday.com/money/industries/food/2011-07-25-ecoli-testing_n.htm

.."In the past few months, newly available tests have made it possible to check for a broader number of the microbes and they now include the harmful group of E. coli strains beyond O157:H7 known as the Big Six.
The reasons these bugs aren't currently regulated are a mix of politics, money and plain biology — the bacteria are constantly evolving and turning up in new and nastier forms, making writing rules about them a bit of a nightmare.
For example, the German E. coli variant that sickened more than 4,075 in Europe and killed 50, including one Arizona resident who traveled to Germany, wasn't known before this spring. It's only the latest in a list of E. coli types that can get into food and kill people.
If you've been hit by one of the unregulated forms of E. coli, you know they can be as nasty as the one that is illegal. Just ask Richard Cardinale. The 19-year-old Ohio State University student was studying for a math exam last year when he got stomach pains "so unbearable" he couldn't do anything but lie in bed.
By morning he knew something was seriously wrong, and he went to the emergency room. He was having bloody diarrhea and was in such pain he couldn't stand up. "It was scary, it was so severe," he says. Cardinale spent the night in the hospital. It took him more than a week and a half to recover.
The infection that laid him low was a lesser-known E. coli, O145. That particular outbreak sickened as many as 33 people in Ohio, Michigan and New York. It was later linked to romaine lettuce. Cardinale was one of several students at Ohio State who were sickened after eating at a newly opened salad bar on campus..."

At the time it was thought that only one particular E. coli type carried the dangerous Shiga toxin that had proved so deadly. In the last decade it has become clear that multiple forms of E. coli carry the toxin, with the six most deadly dubbed "The Big Six." Under the new rule, those six will no longer be allowed in raw ground beef meant for human consumption.
USDA's Food Safety Inspection Service is expected to announce it will begin testing for these non-O157:H7 forms of E. coli beginning March 5, 2012.
Posted 5/27/2012 10:07 PM (GMT 0)
regardless of whether we test negative for whatever when we were originally diagnosed...it doesn't mean we cannot pick it up from wherever, whenever.


For those of you who are only invested in seeking the why and the cure...my opinion is get over it.  Not to say that some of the reading isn't interesting...for some, it becomes an obsession.


People carry all sorts of stuff and spread it around without having any symptoms themselves.
Yes, lots of stuff in our food system, even in our own back yard growing our own foods, etc...we can still pick up something from there.

It doesn't mean that it's a continual cause for the perpetuating UC we already have. If it's cured because of antibiotic treatment, there's a huge margain for misdiagnosis.
This is why I strongly suggest anyone to get copies of their test results and to not assume that "colitis" means UC, etc.

q

Posted 5/27/2012 10:11 PM (GMT 0)
The Big Six: USDA's Newest Banned Bugs:
E. coli O26
E. coli O45
E. coli O111
E. coli O103
E. coli O121
E. coli O145
http://www.foodsafetynews.com/2011/09/meet-the-big-six---usdas-newest-cast-of-adulterants/

How many of us were tested for these E. coli? Please, read the article. It is so easy for us to get sick from these bacteria. I am very angry that doctors do not test for all of these bacteria. I wonder how many of us have one of them!?
Posted 5/27/2012 11:04 PM (GMT 0)
Here is a study on natural antibiotics of MAP.

In the past I have tried oregano oil,but cant remember how much or

for how long. Perhaps these oils need to be enteric coated, to get

partway though digestion,if they are destroyed in the upper gut.

Pro: THe paper you posted makes an interesting case for MAP being the

cause of both crohns and UC.  I happen to live close to two working

dairy farms,and years ago I did use manure for a year or two on my garden.

Old Mike

http://aem.asm.org/content/74/19/5986.full

Here is a history,interesting the first report of Johnes in the USA was 1908,

UC started to increase around 1920.

Just click on the dates at the top to see later time periods.

http://www.johnes.org/history/index.html

Post Edited (Old Mike) : 5/27/2012 5:43:25 PM (GMT-6)

Posted 5/28/2012 12:29 AM (GMT 0)
Old Mike,
I have read a few articles about natural antibiotics a few years ago. So, I took a few brands of oil of oregano. Did not really help. Also, I took grapefruit seed extract for awhile and colloidal silver ( 2 brands) for about 2 months. Did not help. All 3 of them are the strongest natural antibiotics. I also tried garlic, Pau D'Arco, Manuka honey, calendula, bee propolis, Essiac tea (2 forms), Olive leaf extract...
Also, at least that many different probiotics.
BUT. Comparing to many people on this forum I did not take any prescription medications, except the first 2 weeks after my diagnoses with ulcerative colitis ( I had a very severe reaction to all 3 drugs I was prescribed: Prednisone, Rowasa, Colazal). The only 2 things worked for me= very strict diet and Mutaflor. Now it is Terramin and Pascalite clay and the strict diet for the 1st month.
Posted 5/28/2012 2:00 AM (GMT 0)
Now hold on here, the only REAL diagnosis for UC are biopsies taken during a colonoscopy.
There is no question about it and during my journey with this illness, I was mis diagnosed until I was correctly diagnosed, SOoo as I said, the only real diagnosis is the biopsy one which I'd like to believe anyone who claims they have UC has the biopsies to prove it.
That being said, sure there is an "event" or insult if you like that kicks UC off , but after the bleeding gets going, it's a totally different animal than MAP, or CDiff, etc. They can all be present at once, but only UC is UC.
I'm not sure where this thread is going but once you have UC, how you came to get it really doesn't matter, the defective genes were present in your dna to allow it to manifest itself, now it's "how do I not die or have to have surgery" time......
Posted 5/28/2012 3:04 AM (GMT 0)
Yes, Beatuc, as far as I know too the only way to diagnose UC is by doing colonoscopy and biopsies. I had both. I also have a copy of my colonoscopy with pictures, a copy of my biopsies and a copy of my stool analysis. My colonoscopy was done by the Cheif of Staff of the hospital, who is a gastroenterologist and he diagnosed me based on the colonoscopy and the biopsies results.
I assume this is how everybody else got their UC diagnoses.

I think it is very important to know what caused the disease itself. Without knowing the cause we will never CURE ulcerative colitis and Crohn's. We will only "control" or suppress the symptoms.
If it is MAP virus or one of the E. coli strains and we still have them we will never truly get well.
As for the "defective gene", I do not believe in this theory. I have lived for 35 years and the "defective gene" was just fine and suddenly at the age of 35 it got "triggered"?! No one in my family, a few generations back ever had or heard about colitis, ulcerative colitis or Crohn's diseases.
Posted 5/28/2012 4:19 AM (GMT 0)
How I understand it....there's no specific diagnosis...yes, it's UC, via biopsies. What is stated, as per the possible diagnosis or already diagnosis through elimination, is "consistent with" based on the pattern of cellular placement/changes, inflammation, etc.

And original diagnosis of concluded UC, because of the consistency of biopsies matching what is UC....sometimes that will change to more consistent with CD (CD of the colon can mimic in early stages and when it follows UC's pattern of inflammation) or indeterminate because it lies between the two.

So yes...there's confirmation that other things are ruled out from the GI via other testing, but there's not a diagnosis of UC, perse...only because the doctor would suspect it, to find out if it is, in fact that, the biopsies confirm that everything leads to that. 

 
q

Posted 5/28/2012 1:36 PM (GMT 0)
No, biopsies are "proof positive" of UC and whether you believe in the defective gene theory or not, it's also been proven and identified. You don't have to have relatives with UC for the defective gene idea to be valid.
An insult to the system kicks UC off and the defective gene has to be present for UC to manifest itself. THis is not theory, it's proven fact and been tested and researched extensively.

http://insciences.org/article.php?article_id=8519
Posted 5/28/2012 2:21 PM (GMT 0)
The fact still remains-there is no cure for ulcerative colitis/Crohn's, according to the medical community. This means the scientists, the doctors know as much about how GI and immune systems work in the body as what is going on Mars.
If there is a defective gene problem prescribing immunosuppressants and prednisone will not fix the problem!
Posted 5/28/2012 4:00 PM (GMT 0)
The cause(s) have to be known in order to create a cure, more than likely anyways...so in essence it does matter how you got an IBD, if researchers can ever truly figure it out, if not, then I sure hope stem cell therapy becomes our cure for all of us regardless of how we ended up with an IBD. Be nice if it aided with IBS as well (since I have that too lol).
Posted 5/28/2012 8:45 PM (GMT 0)
I'm newly diagnosed with UC so my own personal experience and research is limited but for what it's worth here's what I have been thinking about this subject myself.

I do believe that there is a strong genetic component and that those who suffer from UC probably have other immune disorders (whether they know it or not). They probably also have some family history, whether they know it or not because let's face it, discussion of one's bowel habits has only become acceptable in modern times and even now it's largely confined to internet-land. I suspect my mother has UC because she has suffered unspecified 'digestive issues' for as long as I can remember. I also believe that those who have the UC genetic element are latent and only develop full blown UC following a trigger event. This trigger event is a bacterial introduction and possibly/probably compounded by the use of antibiotics. This is based on my own experience but also corresponds with the stories of others. The only problem I have is that I think UC may be a blanket term for a range of related conditions each of which is symptomatically slightly different. Someone earlier stated that 'true' UC is characterised by bloody bowel movements but I have no blood. Some here speak of constipation - I have the opposite issue. So is there a spectrum of inflammatory bowel diseases which look the same on biopsy analysis but are quite separate? Or are they different manifestations of the same condition? At the end of all that I am in the camp which believes that most of what ails us is still shrouded in mystery and little is truly understood. Therefore I do believe that there are cures for conditions we currently believe to be chronic and incurable - and part of the path to that lies in the UC sufferer layman trying to relate personal experience to what's out there in terms of cold scientific research. For sure I'm not about to lay down and give up!! smilewinkgrin
Posted 5/29/2012 11:48 AM (GMT 0)
Lets assume the most plausible explanation of IBD is a genetic predisposition, a bacterial trigger, and an autoimmune response. Now, here we sit with this condition "without" a cure. Regardless, UCers treat this condition by targeting the immune system, the inflammation within, and the vital gut flora/bacteria component.

Remission is usually short term via immune/inflammation alteration and gut flora therapies. However, a cure is obtained via removal of the colon. So, it must be safe to say, the problem still lies within the colon. The immune system is a vital component of UC, but the root problem lies within the colon....thus, remove it and the problem is fixed.

Science only knows about 30% of the colon's flora contents. Thus, there is a 70% chance that the unknown flora contains the root problem. Maybe an infection exists, maybe the flora has been altered and now there is an inbalance, and an ongoing battle of good and bad flora competing for space...similar to cdiff. Now, is this culprit MAP or something else? Who knows, but EVERY other infection that takes place in the body causes inflammation and an immune response. If the infection can't be controlled, amputation is the last resort.

I find it really interesting and puzzling why normal UC stool tests don't test for MAP and other possible pathogens. IMO, the proof is in the pudding (poop)...in this case, the 70% of unknown gut flora.
Posted 5/29/2012 12:23 PM (GMT 0)
To make matters worse, the quality of stool tests is very poor. The standard one run to rule out IBD are extremely likely to false negative most parasites and pathogens. Indeed, when I did worm therapies, a specialist parasite lab falsely indicated negative even though a scope biopsy showed plenty. And the better tests, available through integrative docs, while more wide ranging, also tend to be of low reliability. It's a headache- one can spend a fortune on tests and still be blind. That is probably why GI's tend to dismiss stool testing- but to me it's a copout to use low quality of testing as an excuse not to try.
Posted 5/29/2012 12:38 PM (GMT 0)
I couldn't disagree more that removal of your colon is a "cure" -thats total BS for many reasons that I won't repost here. "thus, remove it and the problem is fixed" -yea great unless UC was actually CD which happens all the time, and also over 40% of people who have their colons removed require additional surgery.

You say remission is always short term -not true! I've achieved remission for years at a time primarily with imuran, but also with diet and lifestyle changes. Obviously in the case of UC/CD the problem lies with the colon and/or digestive system there are many other illnesses that are due to an overactive response by the immune system (MS, lupus, arthritis, etc), all have similarities and all have no real cure. If they can cure one of these diseases, they will probably have cured them all.
Posted 5/29/2012 1:31 PM (GMT 0)
BeatUC, 

The amputation "fix", is of course, only if you have the right diagnosis and without complications. I'm simply quoting what other people have posted and what is printed. I never said that remission is "always" short term. I said, it is "usually"...meaning temporary and not permanent. Try not to be so condescending, I'm only trying to help the cause. I should probably define "cause", before you jump on that as well.

For what its worth, part of the CCFA mission statement is to find a cure for IBD. That tells me I'm not off my rocker to focus on doing so.

 

Post Edited (trojen) : 5/29/2012 7:36:10 AM (GMT-6)

Posted 5/29/2012 1:50 PM (GMT 0)
For whatever it's worth. When you get a j-pouch they often leave a half inch or so of rectal cuff,which is intact rectal tissue.
Many people get what is called cuffitis,which is actually UC of the remaining 1/2 inch of rectal tissue.
Believe it or not just a half inch of inflammed tissue can make you pretty sick.
Old Mike
Posted 5/29/2012 2:30 PM (GMT 0)
I also beleive that it is an unidentified bacteria that causes it specifically. There is alot of research that says it is a part or all of the issue here. Read on if you like. This is not the same link as the origional poster and has more info on that same subject.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718892/

Can anti-MAP treatment heal Crohn's disease?

The answer to this question supported by a correct interpretation of data both from open label studies [-] and the Australian controlled clinical trial is a qualified yes [-]. It can in some people with CD some of the time. When it does so in 'responders' receiving treatment with drug combinations including rifabutin and clarithromycin the clinical and pathological improvement can be dramatic and has been associated with the conversion of pre-treatment MAP positive tests in blood [] and gut mucosa (my own unpublished observations) to negative. Furthermore, some of the clinical benefit resulting from treatment of CD with conventional 'immunosuppressive' agents such as 6-mercaptopurine or methotrexate may actually be a consequence of their demonstrable direct anti-MAP action [-].

Therefore, until western medicine can say unequivically that MAP or some unidentified bacteria is not the cause (which they cannot) there are studies which say it is a factor. I was diagnosed by colonoscopy and biopsy what my GP called crohns/colitis so he cant say I have one or the other oper him yet. My GP said I tested negative for Candida but when I asked him about MAP he didnt konw what I was refering to.

Another interesting article on MAP.

http://www.freshpatents.com/-dt20090108ptan20090012048.php

Steve

Post Edited (twiggs) : 5/29/2012 10:09:37 AM (GMT-6)

Posted 5/31/2012 3:57 AM (GMT 0)
Can we all agree on this?

Ulcerative colitis is just an umbrella term for chronic inflammation in the colon that is differentiated from Crohn's by it's continuous and superficial nature (limited to the mucosal lining). There are likely several causes that are a mix of environmental and genetic factors.

It's also true that several of us have gotten better after taking antibiotics that target pathogenic bacteria which are a potential cause of the chronic inflamation, in the same way that H-Pylori causes chronic infection and ulceration in the stomach of susceptible individuals.

You don't know what treatments are going to work for you unless you try them. Honestly I'm surprised that more people haven't tried the triple ABX therapy before moving on to the big guns like biologics or surgery. I also surprised that some of you have ruled out the possibility that a single cause will be found for a majority of cases, and if you have given up, why you haunt threads like this.
Posted 5/31/2012 11:23 AM (GMT 0)
C_G_K... Good points. May I ask, prior to doing triple ABX therapy, what were your experiences (if any) with antibiotics, before and during having UC? I ask because I went from remission to massive flares after antibiotics on two occasions, in spite of pulsing heavy probiotics doses with them and afterwards. Did you have to endure much if any side effects, or flare worse at first, before improving on the triple ABX? I agree 100% that it seems to me a no brainer to try that therapy before resorting to surgery.
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