Borody, Crohn's & Anti-MAP

There has been a lot of discussion with respect to the treatment of Crohn's (and related IBD's) in the various forums.  for instance are IBD's bacterial, if so can it be treated with a cocktail of antibiotics, does borody take foreign patients, etc.

I have what doctors in north america like to discribe as crohn's.  i have done the standard drugs, imuran, etc and of course remicade and humira.  i did a great deal of research over a 5 year period with respect to anti-MAP and came to the conclusion that there was a higher probablity that crohn's was simply a discription rather than a disease, that MAP was the true culprit, MAP is in everything and that for some reason a small percentage of individuals had adverse reactions to MAP in their bodies.

I contacted the CDD in australia and made an appointment with Dr/Prof Borody.  It took about 6 months to get in to see him.  The costs, including the trip, accomodations for a few days, the proceedures, assessments and prescribed drugs came to roughly $5,000.

Their clinic is top quality, everyone is very professional and pleasant.  Within the first few minutes of conversation with borody you quickly understand that borody has forgotten more than most GI's will ever know. DO YOUR RESEARCH before you go, because when borody discusses your situation you will understand what he is talking about.  Also remember, he was part of Marshall's team who won a nobel prize for medicine 10 years ago for the treatment of ulcers.  Many of us will not remember that until Marshal, ulcers were thought to be caused by stress, and a variety of other causes...sound familiar?

about a week before you arrive you will be asked by borody's staff to obtain specific blood tests: iron, vitamin D, CRP, CBC, and a few others.  As most of us know, Iron and CBC's are usually out of wack.  Iron & Blood because they are leaching from the infections. Iron can be so bad that there is essentually nothing left in our bodies and taking Profirin and/or IV drips does little.

I was prescribed 4 antibiotics not 3.  They are Ethambutol, Clofazimine, Rifabutin & Clarithromycin. Further I was prescribed Vitamin D and several Iron infusions.  Two of the antibiotics are started at a low level to test your ability to consume and increased over a period of 3-4 months to full dosage.

Some background.  MAP is essentually a bacteria in the same catagory as TB and Leprosy.  Not unlike TB and Leprosy, the bacteria is very tiny and takes a long time to divide which means it takes a long time to kill. A culture will take from 9-12 months.  Not unlike TB and Leprosy there are more than one strain and thus require different challenges. The drugs that I was prescribed are also used for TB and Leprosy - no one drug cures you from TB, Leprosy & crohn's and not all treatments are effective in curing all TB, leprosy and crohn's.

In the 6 months that I have been on the 4 antibiotics, i no longer require the vitamin D nor the iron.  this basically means that i am healing.  I feel great, actually i feel excellent.  the only side affect to date is that one of the antibiotics causes my urin to change to an orange color and my skin has darkened; darkened so much i have the appearance of a suntan.  this is good because not only do i feel great, i look much better too. The color change is not perminate, this will disappear upon discontinuation of the drug.  

I will be on the cocktail for 18-24 months and then i will be cut back and put on a maintainance dosage.  the amounts i am not sure of, but when i go back to see borody, and i very much intend to go back, they will advise.  FYI, MAP is in everything, for some reason a small percentage of individuals can not cope with MAP in our bodies, MAP will return and our bodies will flare again, thus the maintainance dosage.

two of the drugs are very hard to come by in north america so i order the drugs from australia and they are delivered to me via courier.  the cost of the drugs and shipping from australia to my home is about one third the cost of what i would pay for the drugs here in north america.  total cost of the drugs per month...about $150 compared to one injection of humira in the $750 range.

would i recommend this to anyone.  well all i can say is that it has worked for me.  everyone has different symptoms, but my reseach suggests that crohn's is bacterial.

Finally, the staff at CDD are wonderful.  i was given direct email addresses of the individuals i needed to communicate with and i have exchanged several over the 6 months.  All have been fully addressed in a quick fashion.  remember, australia is 15 hours ahead of us, sometimes i get a response back from australia before i sent it. (:>)

Oh one further piece of information, you can not do all this unless you have a sympathetic doctor who will be prepared to do some specific things for you.  for instance, you will need regular blood test to see how you are responding to the drugs.  Also i get two of the 4 antibiotics from australia, the other two will need to be prescribed by your local physician.  Also there will be a time (havent got there yet) when another colonoscopy will need to be performed.  it will be much cheaper to have it done in NA as opposed to travelling to australia to have it done.  so your physician will need to order one for you.

I have simply scraped the surface, so if there are any questions please feel free to ask them.  it may take a couple days to respond so if i don't respond immediately its because i have limited time to check back.

REJ

Thank, Rej, for such detailed info. We've discussed Dr. Borody and his MAP treatment here many times. I love this topic because it gives me such hope that someone in the world gives a darn about finding a cure. Thank you Dr. B!

My question is, (if MAP is a cause or contributor to CD), what happens when/if patients can get reinfected? How many times can a CDer do the treatment? How do you avoid MAP now?

I recently read that some docs, acknowledging MAP in the intestines of CDers, think it might not actually be causing damage. I personally think they're probably wrong, considering Johne's in cattle. I also think that the GI who discovered Crohn's was probably right, Dr. B. Crohn, who believed it also to be caused by MAP. We need more research about this.

Dr. Borody should continue his research to prove the MAP theory one way or the other, enough to convince the rest of the medical community. If he does, he deserves his own Nobel prize.


Also, Prof. John Hermon-Taylor's in UK is also working on a cure for our disease, based on the MAP theory. Hopefully his vaccine will be successful, too.
(God speed them both.)

To Roni & Nanners:
Although Dr. Borody has been part of the ongoing research, many individuals are responsible for proving the link between crohn's and MAP. In fact MAP is the cause of crohn's. in more indepth research you will come across a term referred to as "Koch's postulates" it is the criteria need to establish the relationship between a causative microbe and a disease. if you go to wikipedia you can learn more about Koch's Postulates. these criteria have been established.

Regarding reinfection. first off, everyone must understand that MAP is in everything. Dr. Taylor did an excellent video that basically explains this. MAP is in the ground water and anything to do with the cow, etc. So consuming it or reacquiring it is extremely likely. research has detected MAP in most humans. the difference is a small percentage of individuals, for whatever reason, react to MAP in their bodies. This is not unlike cholera & TB. MAP can not be avoided. Many on these forums have argued that MAP is not the sole reason for crohn's. they are correct. crohn's sufferers are predisposed to react to MAP. why, no one knows at the moment. there is ongoing gene research that may bring more light on this.

you asked how many times can the ant-MAP work. not sure but keep in mind that bacteria can become more resistant thus the reason for the maintainance dosage of the antibiotics as opposed to a full stop. I and others under borody will be on this full time until someone finds the reason we over react to MAP.

Hi REJ

You wrote that your skin looks suntanned! Doesn´t like the sound of that, how is your liver doing? you know you can get jaundice if your liver is taking the rap?

this is so interesting!!!!

according to Roitt's immunology, "mutations in the NOD2 gene, encoding a cytoplasmic pattern recognition receptor for the muramly dipeptide of bacterial cell wall, are strongly associated to Crohn's disease. AND that crohn's is a probable result from dysregulated mucosal immune response to microbial antigens in the gut".

in other words, NOD2 gene messes up a receptor in our lymphocytes therefore not recognizing microbial antigens. well, REJ, Dr. B's theory sounds completely legit!

im going to talk to my GI about this next week to see his opinion.

well, even it is was MAP and we use antibiotics. it will come back because we dont have receptors to recognize certain microbes. so its a never ending cycle no? i always understood it to be an underlying genetic issue that is triggered by external factors. i was just curious to see what my GI thinks since he's also a prof at mcgill. i just think that our disease is so fascinating!

I hope you guys don't mind in if I hop in here with some alternative ideas.

I also believe that MAP is the primary reason for my case here b/c when I sent in a special test, which was recommended by my naturopathic doc, to send to Great Smokies lab?(forgot the exact name) I tested positive for Mycobacterium Avium Paratuberculosis.

And I met a few people who used Bob's Protocol for almost a year to make themselves free from MAP. This protocol works well for Lyme disease so it's still possible to work on Crohn's patients who have the MAP issue in their intestinal track.

However, with just the antibiotics it is impossible to get rid of the MAP that hides inside the lymphatic systems of our body. That's what the protocol aims to kill and the blood eletrification for the ones flowing around the blood. This protocol has done wonders for Epstein barr patients too.

Just a warning, according to the person who used it, he said, don't use the blood eletrification when on any immuno suppressing drugs because he flared harder and you only get sicker.

He swears by it and he was down from almost 200lb to LITERALLY, 100lb until he got better JUST from this protocol. He went off of prednisone and antibiotics, which were helping him but not helping him enough to live a normal life.

I'm trying the protocol very soon. Materials needed to start this protocol might be expensive to afford but I'm sold.

A lot of people think this protocol is fraud and misleading but all the studies are there.

noories,

Yes, I think MAP is always naturally in us. Normal immune system keeps them in balance. Someone said this before, it's almost impossible to avoid MAP. It's not only in certain food/drinks like milk.

I think many factors contribute to the rise of MAP. Of course, stress being one of them. We all know that stress indirectly affects our immune system and I'm sure you've heard of some Crohnnies going, stress is definitely making me flare!

Heavy metals inside our body also help MAP, other harmful bacteria, candida, etc to form a symbiotic relationship and therefore, creating like a colony for themselves, a shelter. Even if you are in the reference range of heavy metals, it doesn't ensure you that they aren't hurting your immune system.

And what IF, this is just a personal theory, MAP is dwelling inside our organs such as gallbladder? It can definitely lead to mysterious cholecystitis in some cases and WHENEVER you eat, MAP will be released down the intestinal track along with BILE. It is impossible to not release them when you eat.

Infection will repeatedly take place with compromised immune system.

When person gets diagnosed with CD for the first time and is given IV-steroids or prednisone, I think it's only shutting the immune system down so you don't respond to the infection from MAP. But MAP is still present. And this range of remission time period differs for every individual. Someone might experience 20 years remission and will flare harder the next time. Or someone might not even respond to steroids at all.

So how do we kill it?
Surely, our diet has to do with it. If we keep putting down sugar, HFCS, preservatives, additives, and synthetically processed junk food, we won't get better if you are already down in the drench.

Exercising to get our blood flowing will definitely bring up our immune system and I've always wondered why, if two people ate the same infected food, how come only one gets sick and the other doesn't sometimes?

It's probably because the none sick person has better immune system. It's like saying immuno compromised people have higher chance of developing C. diff infection while the healthy ones not so much.

I know that diet doesn't matter for handful number of people but in the end, we are what we eat, I believe.

You can criticize my theory or shut me down if you want b/c this whole thing may be rubbish, it's just my personal theory and all I can say is that, with some luck, good diet, exercising plan, and anti-stress therapies you might land a jackpot.

If you are NOT born with a disease, I believe your body can go back to the state when you were disease free.

Oh, just to add if I sound like I'm against conventional treatments, I'm not against it and I think when you are experiencing a life threatening or severe flare, you must take necessary measures with your GI to get better.

You won't get better with a broken arm by staying at home, right? Gotta hit the hospital lol.

MAP-related discussions have become quite argumentative in the past, so may I suggest that we limit our discussions to the treatment protocol and other practical issues, rather than whether MAP is a valid theory or not, or whether we agree with it?

Really, we have argued over this so many times, and it would be horrible to have our (currently ) nice and friendly forum disrupted by yet another argument.

REJ, it's interesting to hear from someone who has actually visited Prof Borody. Would you mind if I asked how much the actual consultation cost? I'm in Aus already, so wouldn't have the big travel expenses that you'd have.

His therapy isn't something that I'm interested in exploring just now, but I'd still like to know more about how he functions.

Did you have to stay in hospital, as an inpatient, when you began treatment, or did you stay in an hotel and just visit him regularly? How long did you have to stay in Sydney before you were allowed / able to travel home again?

Ivy.

To: This too shall pass.
you asked about the skin discolouration.
for: Rifabutin: "This medication may cause urine, sweat, saliva, or tears to turn brown-orange. This effect is harmless and will disappear when the medication is stopped. However, dentures and contact lenses may be permanently stained." a personal note, it isn't as if oange fluid is ozzing out of my pours, rather it is really only noticable in my urine, and although i was well aware it was still going to happen it was kind of strange when it happened. now i don't think of it too much.

for clofazimine: "Skin discolouration: reddish to brownish-black colour, particularly in fair-skinned patients at sites exposed to light. Discolouration of hair occurs in 75-100% of patients. It is reversible but may take several months to disappear after the end of treatment". It is interesting to note that for rifabutin, it says this discolouration is harmless, but for clofazimine it says nothing. in my case the color is not unlike a natural dun tan.

G'Day Ivy (sorry couldn't help myself)
Dr/Prof Borody has his office in the CDD located just outside of Sydney. Actually it is more a mini hospital, a two story building amoung other medical buildings in the area. Some black humour here...there was a funeral home at the end of the block.
The costs broke down as follows:
$700+/- for consult
$700+/- for colonoscopy & endoscopy, this included the anesthetist
Note: my apologies for my spelling, i tend to type and go & hope a spell check system catches my errors, there isn't one on this forum.
$200+/- lab work
$300+/- rifabutin & clofazimine
My heath plan will cover some of it, perhaps 40%
I stayed with friends in sydney and spent about 2 weeks between melbourne and sydney, rented a car
It is mostly a one day event. early start 9am and left about 6pm. you visit with Borody twice, again in the morning and after he has the results of the tests. you are introduced to his staff, everyone is very professional and personable; if you are into humour the staff will engage. in most cases first names are used by everyone. you have to come back to get the drugs a few days later, if you chose to take on the anti-MAP program.
There were on average 3-4 people in the waiting room. his office is quite interesting. You get a full printout of your assessment and this includes full images of your intestines from mouth to anus with anecdotal notes. The staff will communicate with doctors and staff world wide.

Tara28, can you send an eMail to me at ___________, i would like to have a personal discussion if you don't mind. thanks REJ

*******************

REJ, I edited out your email address to protect you from spam. Could you please put it in your profile instead?

Ivy.

Post Edited By Moderator (ivy6) : 9/22/2011 2:35:53 AM (GMT-6)

i read Brody said that 20% of crohns is genetic and 80% is MAP related. i printed a whole bunch of articles for my microbiology class tomorrow!!!