Re: Re: Crohn's, MAP

[Guest guest]

On Mar 2, 2007, at 8:39 AM, Barb Peck wrote:

> My sister in law and her daughter have Crohns really bably -

> (daughter's been operated on and now doing Remicade infusions.

>

> I can't get them to think bacteria terms at all.

>

> Would you be willing to talk to either of them?

> Please email me thru if yes.

It hasn't been proven that MAP is causing Crohn's; my doctor says it's

been disproven, only a handful of doctors are pursuing the theory. I

doubt I'd have any influence on them, and even if so, their doctors

wouldn't prescribe antibiotics. I suggest reading through the

literature you can find on the internet. I'm putting my records

together to send to a doctor through the U. of Florida to see if I can

get tested. I don't have severe Crohn's, and a doctor I spoke with in

Texas says he only treats severe Crohn's, and even then, the relapse

rate is very, very high. After I speak with the doctor in Florida,

I'll know more about the treatment. I still don't know if I want to

pursue it myself, as quadruple antibiotic therapy for 2-5 years with

only a 25% success rate sounds ominous.

[Guest guest]

Debbie, Do you know which 4 antibiotics are being used? pennyBarb Peck <egroups1bp@...> wrote: OK- Thanks for info.Barb> > > My sister in law and her daughter have Crohns really bably

-> > (daughter's been operated on and now doing Remicade infusions.> >> > I can't get them to think bacteria terms at all.> >> > Would you be willing to talk to either of them?> > Please email me thru if yes.> > It hasn't been proven that MAP is causing Crohn's; my doctor says it's > been disproven, only a handful of doctors are pursuing the theory. I > doubt I'd have any influence on them, and even if so, their doctors > wouldn't prescribe antibiotics. I suggest reading through the > literature you can find on the internet. I'm putting my records > together to send to a doctor through the U. of Florida to see if I can > get tested. I don't have severe Crohn's, and a doctor I spoke with in > Texas says he only treats severe Crohn's, and even then, the relapse > rate is very, very high. After I speak with the doctor in

Florida, > I'll know more about the treatment. I still don't know if I want to > pursue it myself, as quadruple antibiotic therapy for 2-5 years with > only a 25% success rate sounds ominous.>

[Guest guest]

Exactly what I was wondering. Are they using the SAME 4 abx for each case? If so, then a 25% success rate is down right amazing. pennydumbaussie2000 <dumbaussie2000@...> wrote: This is where the science needs improvement 2 to 5 years of antibioitics gives you an idea of how large this infection is. And the 25% success rate tells you they need to target better.I find that streptomycin is a 1000% better than rifampicin in treating infections, yet some arsehole

pharmaceutical company went out and created something easy for doctors to dish out and threw in all the bellsand whistles testimonies on a crap drug IMO.> > > My sister in law and her daughter have Crohns really bably -> > (daughter's been operated on and now doing Remicade infusions.> >> > I can't get them to think bacteria terms at all.> >> > Would you be willing to talk to either of them?> > Please email me thru if yes.> > It hasn't been proven that MAP is causing Crohn's; my doctor says it's > been disproven, only a handful of doctors are pursuing the theory. I > doubt I'd have any influence on them, and

even if so, their doctors > wouldn't prescribe antibiotics. I suggest reading through the > literature you can find on the internet. I'm putting my records > together to send to a doctor through the U. of Florida to see if I can > get tested. I don't have severe Crohn's, and a doctor I spoke with in > Texas says he only treats severe Crohn's, and even then, the relapse > rate is very, very high. After I speak with the doctor in Florida, > I'll know more about the treatment. I still don't know if I want to > pursue it myself, as quadruple antibiotic therapy for 2-5 years with > only a 25% success rate sounds ominous.>

[Guest guest]

On Mar 2, 2007, at 8:33 PM, wrote:

> > I still don't know if I want to

> > pursue it myself, as quadruple antibiotic therapy for 2-5 years with

> > only a 25% success rate sounds ominous.

>

> Where's your 25% figure from?

>

> The only trial I recall with 3+ antibacterials, is the T Borody trial

> with ~12 patients. It was extremely impressive, with a high success

> rate. I'd be glad to email it to you if you lack access.

>

> However, I (semi-vaguely) understand that it's not unusual for a trial

> of this size to show an effect that fails to be demonstrated when a

> larger trial is performed. In this case, a very large trial was indeed

> done after Borody's small one was so successful. P Gibson is heading

> it

> up. In some journal, I read a conference transcript, over two years

> ago

> (I am pretty sure), in which it was stated that the trial went well

> and

> that data collection was complete. I am really wondering why it

> apparantly has not come out yet. Perhaps it has? Could I be mistaken

> about it being Gibson's study?

The large trial was finished in 2004. It showed remarkable efficacy at

16 weeks, then 2 years follow up, there was no difference between

normal treatment and the antibiotic treatment. My doctor considers

that if you used the best antibiotics against the infection, and it

didn't work, then it proves it's not causing it. MAP is slower growing

than leprosy; an extremely slow growing mycobacterium, and there's a

doctor in London who has made a vaccine against it, but only in the

mouse model. Dr. Borody feels that the above trial had some major

flaws; they put everyone on Prednisone first, and those who weren't in

remission at 16 weeks were dumped from the trial. One of the

antibiotics used was at a lower dose than Dr. Borody used with his

patients. I guess the belief is it is much harder to kill than MAC,

which many people have relapses of, so despite quadruple antibiotic

therapy for 3 or more years, there is no guarantee that you've

eliminated MAP. Testing for it is still in the clinical stages, so you

can't test your own bacteria to see which antibiotics are effective

against it. Also, Borody believes that if you've ever had one of the

antibiotics before, there's a chance that your MAP has become resistant

to it, complicating the problem.

I',m trying to make a phone appointment with a doctor in Florida who's

had a few small studies with about 25% efficacy. Those who are

diagnosed sooner after their initial infection generally fare the best.

As I am coming up to 19 years, have had one of the antibiotics used,

as well as Cipro and Flagyl, which also may render them resistant, I am

not a great candidate. So I want to see if there is somewhere I can

get my colonic tissue samples tested, and speak with the doctors who

have the most experience in treating their patients. One of the

antibiotics used I had a single shot of 1 year ago, and my inflammation

went way up, and I have been in a flare on and off since then, so the

idea of taking it twice a day for years is frightening. If I choose

this treatment, I want to do it right, since if it doesn't work, there

isn't anything else out there for it, and I've made the MAP antibiotic

resistant, and then what do I do?

>

> There is no direct proof at all that that is what's going on

> in Crohn's, that I know of.

They just increasingly keep finding it in Crohn's tissue; as high as

90%, and it is being found in Germany, Japan, etc. The last 5 years

have made for better techniques in isolating the bacteria. It's now

been found in breastmilk, live cultured in blood... and they've

infected a baby goat with e's disease (where MAP is proven to be

the case) with a human found MAP bacteria. Doesn't prove it causes

Crohn's, but what I don't understand, is why do they consider it an

innocent bystander, when it causes the same disease progression in

cattle? If I were to test positive, irregardless if it caused my

disease, shouldn't I treat for it? This is missing in all the

literature that claims it doesn't cause Crohn's. If it is turning up

in almost 80% of our tested tissue, why is it harmless, when TB,

leprosy, MAC is not? They never answer that question.

[Guest guest]

On Sun, Mar 04, 2007 at 05:14:06PM -0000, wrote:

>> One of the antibiotics used I had a single shot of 1 year ago, and my

>> inflammation went way up, and I have been in a flare on and off since

>> then, so the idea of taking it twice a day for years is frightening.

>

>Yeah, that's a little scary. There are certainly concievable

>mechanisms by which something bad could take place... say you kill

>70% of the bugs but the remaining 30% are invulnerable to treatment

>because of some reason relating to their physiology. Killing the 70%

>will deliver a lot of antigen to stimulate the immune system to react

>more severely against the 30% you are stuck with. Thus, you would get

>sicker.

There's another possible mechanism, too: the shot of antibiotics kills

bacteria, and produce inflammation. The immune system sends white blood

cells into the inflamed area, to deal with it... but those white blood

cells are themselves infected with some slow-growing bacterium like

tuberculosis or chlamydia pneumoniae. They then spread that infection

inside the inflamed tissue. The patient then has a long-term infection

in those areas -- an infection which is very hard to eradicate.

[Guest guest]

I think that's a very good possibility. pennyNorman Yarvin <norman.yarvin@...> wrote: On Sun, Mar 04, 2007 at 05:14:06PM -0000, wrote:>> One of the antibiotics used I had a single shot of 1 year ago, and my>> inflammation went way up, and I have been in a flare on and off since>> then, so the idea of taking it twice a day for years is frightening.>>Yeah, that's a little scary. There are certainly concievable

>mechanisms by which something bad could take place... say you kill >70% of the bugs but the remaining 30% are invulnerable to treatment >because of some reason relating to their physiology. Killing the 70% >will deliver a lot of antigen to stimulate the immune system to react >more severely against the 30% you are stuck with. Thus, you would get >sicker. There's another possible mechanism, too: the shot of antibiotics killsbacteria, and produce inflammation. The immune system sends white bloodcells into the inflamed area, to deal with it... but those white bloodcells are themselves infected with some slow-growing bacterium liketuberculosis or chlamydia pneumoniae. They then spread that infectioninside the inflamed tissue. The patient then has a long-term infectionin those areas -- an infection which is very hard to eradicate.