Report on Dr. Borody's presentation

[Guest guest]

From : Duclayan gduclayan@...>

I just wanted to report on Dr. Borody's presentation last night. This

e-mail is likely to be somewhat long and rambling. Sorry! First, there were

nearly 600 people there, and they said that they were expecting 50! They

also said that people had traveled from as far as Canada and Wisconsin to

see the presentation. The place was packed.

Dr. Borody started the talk by saying that he has a financial stake in a

company called Giaconda, Ltd. which is planning to market the antibiotic

treatment that he has tested. He didn't say this, but the Giaconda website (

http://www.giacondalimited.com/) calls the treatment " Myoconda. " (I Googled

it.) It's good to know that Borody has a potential conflict of interest and

that he is open and honest about it. I don't think this detracts from his

research.

Dr. Borody stated that since this treatment is still investigational, he

uses it only to treat patients who are severely ill and who have failed most

other treatments. As examples, he said that one patient had been told that

she would need to have her colon removed. Another woman mentioned her

daughter who was in the hospital with fistulas draining to her abdomen. Dr.

Borody said that the treatment would be appropriate for her. One person said

he was in remission and asked whether the treatment would be good for him.

Borody responded, " If it ain't broke, don't fix it. " So, if you are doing

well on the SCD and whatever other treatments you are using, I suspect that

the triple-antibiotic therapy is not for you, at least not until further

tests have been conducted and it becomes a more mainstream treatment.

By the way, Dr. Borody did state that clinical trials of the triple

antibiotic treatment are planned in North America for late 2006. He said

November or December 2006. To find out more about this, I would suggest

contacting Borody's clinic, the Center for Digestive Diseases in Australia:

http://cdd.com.au/. You might also contact Giaconda, Ltd. at the website I

gave above or see this page of their website:

http://www.giacondalimited.com/pages/products/myo_conda.html. The Giaconda

website states " Nevertheless, with the first Myoconda Phase III study

complete, Giaconda has developed a clearly defined path to market for the

product, with commercial launch in the US expected in 2008. " That probably

means it won't be approved until 2010 at the earliest!

Likely many of you already know about the proposed link between MAP and

Crohn's, so I don't want to bore you with too many background details; also

I'll not get into the controversy of whether this theory is correct or not.

Suffice it to say that Crohn's closely resembles a bovine disease called

e's Disease (pronounced yo-neez). e's Disease is a chronic

diarrhea-causing infection caused by Mycobacterium avium paratuberculosis

(MAP). Mycobacterial infections as a whole are difficult to treat with

conventional antibiotics; leprosy and tuberculosis are other infections

caused by mycobacteria. They generally require multiple antibiotics over an

extended period of time. Dr. Borody stated that with the advent of AIDS, a

number of patients developed Mycobacterium avium complex (MAC) infections.

Drugs were developed to treat these infections; these drugs can also be used

to treat MAP. Only two of the drugs that Dr. Borody uses in his regimen are

available in the United States (I'm not sure which drugs he actually uses in

his treatment. It might be on the CDD website), but he said that other

available drugs could be substituted.

To treat MAP it is very important to ALWAYS use at least three anti-MAP

antibiotics. Using fewer than 3 anti-MAP antibiotics could potentially

result in antibiotic resistance. Anti-MAP antibiotics include macrolides

(Clarithromycin and Azithromycin), rifabutin, clofazimin, Ciprofloxacin

(Cipro), levofloxacin (Levaquin), and Metronidazole (Flagyl). As many of you

will no doubt note, some of these drugs are already used to treat Crohn's,

though perhaps not in combination. As a side note, he specifically said that

he didn't think that Xifaxan would have any effect against MAP.

People come into contact with MAP through dairy products (including milk),

meat, and water (which might have run-offs from farms…MAP appears to survive

chlorine treatment…it is 100 to 330 more resistant to chlorine treatment

than E. coli, Borody said).

Borody showed colonoscopic photos from his patients that were truly amazing.

These were patients with very severe disease, fistulas, pseudopolyps,

strictures, and on and on. The photos from after the treatment showed

completely healed tissue, with distinctive longitudinal scarring. Borody

said that this scarring suggests to him that the triple therapy heals the

MAP infection through all the layers of the gut mucosa. The scarring starts

out as a fairly prominent rope-like feature and then softens over time,

eventually becoming just a white line. Moreover, he said that there is no

sign of inflammation in these patients, including microscopically. He said

that with other treatments, when a patient goes into remission you can still

see inflammation microscopically. With these patients, there is no

inflammation at all.

A side note on fistulas. Borody said that once the disease is brought under

control with the triple therapy, the fistulas can be treated. He said that

often fistulas will grow a skin-like layer on the inside of the passage,

which is what prevents them from healing completely. He said that once the

disease is in remission, they delicately curette the inside of the fistula

to remove this skin-like layer. The fistula then heals closed.

As I mentioned, Borody said that a Phase 3 clinical trial of the triple

treatment in more than 200 patients has been completed in Australia. He

presented results of this at the British Society of Gastroenterology in

March 2005. Dr. Borody concluded that the results of the trial demonstrate a

statistically significant improvement in achieving remission when using the

triple therapy compared with conventional therapy and once remission was

achieved, no significant difference was demonstrated in maintaining

remission between triple therapy and conventional therapy. In lay terms,

nearly twice as many patients achieved remission within 16 weeks on the

triple therapy (66%) as achieved remission on Remicade (39%). I believe I've

gotten those figures right, but my notes could be wrong. I do know that the

triple therapy was significantly better than Remicade at inducing remission.

Borody said the treatment is better than any other treatment he's seen.

Now that I've brought up remission, let's address this issue of " cure. " Dr.

Borody did not use that term, and in fact he stated that patients may need

to be on the treatment for years, if not for a lifetime. I think he said 3

years at full strength and thereafter at half strength. He told the story of

one patient who had been in remission and off treatment for 4 ½ years. Some

other patients who were treated at the same time as this guy had relapsed,

so they brought this patient in to have a colonoscopic look. In his ileum

they found some small ulcers, so they put him back on a ½ strength treatment

and he's remained in remission. One person asked if such a treatment might

mess with normal gut flora. Borody said yes it would and that he apologized

to the innocent bugs. J He said that his main objective was to restore the

quality of life for the people who have been devastated by Crohn's and that

might mean messing a bit with gut flora. However, he said the treatment is

generally well tolerated and certainly more tolerated than other Crohn's

treatments, such as Remicade (which also tends to lose efficacy over time,

he said).

Borody showed a short film at the end of his presentation that showed 5 or 6

patients talking about their experience with the treatment. They were all

extremely positive, naturally. One thing that intrigued me was that a number

of them mentioned that the treatment slightly changed their skin color. One

man said it gave him a " tan, " and another patient said it made her skin

" pinkish. " All who mentioned this side effect said that is was a small price

to pay for feeling completely well. Also, they all looked completely normal

in the film.

A number of people in the audience asked if there were doctors in the U.S.

who would prescribe the triple-treatment. There are a few, but Borody did

not give contact information. Based on my reading, I think that two of these

doctors may be Dr. Chamberlin in El Paso, Texas,

.Chamberlin@... or wchamberlin@... , and Dr. Saleh Naser

of Orlando, FL, 1-, nasers@.... I have not contacted

these doctors, this is purely my own speculation. But if you desire this

treatment, these might be the doctors in the U.S. who you could contact.

At the presentation they were handing out three papers for additional

reading. I would be very happy to photocopy these and mail them to anyone

who sends me their mailing address. I was able to find one of the more

interesting papers that was handed out on-line. It is written by the

above-mentioned Drs. Chamberlin and Naser. You can find it at:

http://www.medscimonit.com/pub/vol_12/no_2/8181.pdf

When asked about specific advice for eliminating or reducing exposure to MAP

in everyday life, Borody said that one could boil milk and water, " grill "

cheese (whatever that means), and cook beef well before eating it. There

have been studies that have shown that live MAP is found in milk bought at

grocery stores in the U.S. and U.K. In the U.K. the study also looked at

shelf-stable " UHT " milk (AKA Parmalat), which is pasteurized at much higher

temperatures than other milks, and found no live MAP. Samples were small,

however, so this is not conclusive. (By the way, if I wanted to make yogurt

with UHT milk, could I skip the step of boiling it?)

There was no further discussion of diet, and no mention of SCD (except

between me and the people sitting near me as we chatted before the start of

the presentation).One person did ask if Borody thought this might be a good

treatment for ulcerative colitis. He said that the connection between MAP

and Crohn's was made based on similarities between e's and Crohn's.

e's and UC don't share these same similarities. That said, if he was

presented with a severely ill UC patient who was facing having his/her colon

removed, for example, he might consider trying the treatment.

If the clinical trial in the U.S. is as successful at inducing remission as

it was in the Australian trial, then this will truly induce a sea change in

Crohn's treatment, and in ideas about the cause of Crohn's.

Please let me know if you have any questions about the presentation or if

you'd like copies of the handouts.

All the best,

________________________________________

Loving Care,Grammy Gay IBS-1930, IBD-1984, SURGERY-1988, CD-1994,

SCD-1997, REMISSION-1998, NO-MEDS.

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