Borody, Crohn's & Anti-MAP

noories said...
read this today on the Irish Medical Times: MAP infection persists in children with Crohn’s

http://www.imt.ie/clinical/2011/08/map-infection-persists-in-children-with-crohns.html

Just wanted to add some facts that I just found out now:
"Mycobacteria make their way into the body's system via cows' milk and other dairy products. In cattle it can cause an illness called Johne's disease - a wasting, diarrhoeal condition. Until now, however, it has been unclear how this bacterium could trigger intestinal inflammation in humans.

Mycobacteria release a complex molecule containing a sugar, called mannose. This molecule prevents a type of white blood cells, called macrophages, from killing internalised E.Coli."

And even if MAP is the primary cause of many Crohn's patients, I'd think that this finding would get suppressed very much.

For example, remember when H. Pylori was discovered? Despite the massive scientific evidence present, the cause of most peptic ulcers was suppressed for almost 20 years. The doctors used to think that the peptic ulcers was brought on by stress, spicy food, etc.
I think it's simple because the pharmaceutical antacids were so profitable. Pharmas would lose billions of dollars in sales of antacids.

When highly sensitive PCR tests are performed on many Crohn's patients, they almost always test positive for MAP.
They also live deep in the mesentery and lymphatic system and slowly kills its host.

Anemia slowly develops as the Mycobacterium efficiently extracts intracellular macrophage iron. Chronic inflammation gradually scars and narrows the intestines, malnourishment occurs rapidly.

Corporate medicine has invested hundreds of millions of dollars developing chemical drugs to reduce the symptoms of the disease. Current treatments can cost above $50,000 per year per patient.

These are are proven to be true.

This is the sort of information we all need, Mastermom. Thanks for that.

Far too often these threads degenerate into a great big argument, and that drives a lot of people away who actually want to talk about this treatment. I think it's important that people can come here and have a reasonable discussion about the MAP treatment protocol without being shot down in a flame of arguments.

If you'll see my signature, you'll find a "new meds" thread that is sadly outdated, but you'll also see that there aren't many good threads on this forum about anti-MAP therapy, which is why I'm so keen to keep this one good and informative and friendly, so that it can become a resource for present and future members.

Brilliant that she is still in remission - how wonderful!

Ivy.

I hope you don't feel intimidated here. That's why we're trying to stop the arguments and debates, and stick to information and experiences and practicalities.

Best wishes to you all,

Ivy.

Hi again,

I think it is important to remember that the 4 drugs that have been prescribed by borody are perhaps research as well. it takes years to design a drug specifically for a bacteria and the cocktail i am taking is quite probably an attempt to bombard my system from as many angles as possible with the hopes of killing the bacteria. 10 years ago borody had a different cocktail with some success and as each year goes by something new is added and in most cases shows progress; not unlike the ramping up of the cocktail. Also remember that borody's part in the ulcer discovery was that he was mostly responsible for the cocktail of drugs that was used to treat it. Over the years the drugs for ulcers has been refined.

To Mastersmom. part of my research was not unlike a university course where successfully completing a course has a lot to do with understanding the prof's ways of doing things. The first part of contacting borody was to understand how to contact him. He has hundreds of contacts daily from all over the world. many simply wanting free advise. There is a book called "in search of excellence" and it discusses why excellent businesses are excellent. one of the chapters is about sending memos (this was before the internet) basically what it was advising was if you couldn't get your message out on one page it wasn't worth sending because most professional individuals don't have the time to read long memos and simply don't bother. in my case i sent a one page FAX, informing of my history, where i was a year go, what i had been told was in the future and how i would prefer borody's option as opposed to a GI's option of cutting me up. I let the CDD know that i was prepared to travel to australia at any time convenient to them and stay for an unspecified time at my expense, should it be necessary. The long and short of it was that they understood that i did the research and i was convinced that his way of treating crohn's was sound; and i still am.

Another thing to keep in mind, is the treatment for TB, for instance, is not as successful as most think. Decades ago, kids would line up in the school Gym, a nurse would scrape your skin with a needle and a test would be performed to see if you had TB. seriously! back then the test was perhaps 50% accurate, today there are several other tests but i believe i read somewhere that the tests today are only about 85% accurate and even if the test showed to be positive, the drugs available today are only 80% effective; which is just a bit better than the anti-MAP success with drugs that were designed for other bacteria not crohn's. Part of today's medical community believes, that unless the treatment is 100% effective it isn't worth considering. what other treatment for anything is 100% effective?

To Tara28, i tried unsuccessfully to contact you. There is a compounding pharmacy in Victoria,BC, Canada that does sell the two drugs not readily available in north america, Rifabutin and Clofazimine. If you need these drugs and have a physician that will prescribe them contact Victoria Compounding Pharmacy on FORT street and they will be able to provide the drugs. BUT it must be a physcian from Canada. These drugs are not cheap in Canada and it may be cheaper in the long term to simply make an appointment with borody (or anyone of his staff) travel there, have a complete assessment and obtain the drugs from australia should that be the recommendation of the CDD before you leave and renew the prescription by email from australia as the cost of these two drugs are about a third of the cost than in Canada and the US.

Travel to Sydney from the west coast of north america can be as low as a $1,000. car rentals in sydney for a week are in the $300 range, unfortuantely accomodations and food can be pricey in OZ (slang for australia) say in the $100+ range per night, but the Formula 51 can be in the $60 range and perhaps Ivy, our moderator(:>), will take you in. You will drop another $2,000 at the CDD including your first prescriptions. Treat it as a holiday with exceptional benifits, like coming home with hope and good health. drive down the coast to the cultural capital of Australia, Melbourne, see St Kilda, Visit the Italian district on Lygon street, go to an Ausie-Rules Football game. Ausie's are Canadian's with swager. you won't regret it.

Another thing to remember is the wording from pharmacies about the drugs you obtain via a prescription. "Your physician has prescribed this medication because he/she believes the benefits outweigh the risks of the drug"

now let me climb down off my soap-box.
REJ

When a system goes unbalanced, it does not matter wheter the MAP is the cause or a result of it.. You must deal with it too..

If there is MAP found in patient's tissue, then it would definitely contribute to the problem by slowing the digestion. (even if it is not the main trigger)

I have been told that, all mcyobacteria are hard to grow and hard to kill.. this means their time constant is slow.. So there must be natural ways to fight with them ın long term and with patience as well..

That is why cocktails take 2 years to diminish MAP or tuberculosis or lepra or intestinal tuberculosis etc... (all mycobact. diseases)

Anti mycobacterial food and herbs, probiotics, avoiding stress to strenghten immune system, fresh air, fresh food, slow eating, less carbs, excercise, less cleaning chemicals.. etc..

Office people tend to have more ibd, ibs, and they do have the opposite of all of the above

I really wonder about anti mycobact food and herbs.. For ex: In asia tuberculosis used to be very common and they must have many herbal and food/diet solutions for this..(no antibiotic era)

I would like to know how REJ is doing after 3 years! I have an 11 yr. old female family member that was diagnosed with CD a few days ago.

Any advice is greatly appreciated.