Re: Crohn's, MAP

[Guest guest]

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.

Barb

>

> Has anyone here been successful in testing for or irradicating MAP

> (mycobacterium avium paratuberculosis) for Crohn's? I read through

the

> archives, but didn't see anyone actually trying the triple or

quadruple

> antibiotic therapy. Does anyone know of a natural alternative?

>

[Guest guest]

Test post

> >

> > Has anyone here been successful in testing for or irradicating

MAP

> > (mycobacterium avium paratuberculosis) for Crohn's? I read

through

> the

> > archives, but didn't see anyone actually trying the triple or

> quadruple

> > antibiotic therapy. Does anyone know of a natural alternative?

> >

>

[Guest guest]

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]

Deborah

You can't be serious when your talking about a natural alternative?

Serious infections need serious medicines and THEN SOME.-All these

alternatives are just a bandaid aimed more at the feeding aspects of

the bacteria rather than there destruction.The bacteria are sensitive

to envioronemntal factors and just as sensitive to foods and chemical

stimulants.Also the good people at melbourne university that where

doing a paratuberculosis treatments didn't impress me that much.I think

with any ilness you must appreciate the oppurtunistic bacteria present

and unfortunately NO IMBECILE DOES.This in my opinion is the only way

to tackle diseases. I say this because strangely enough I'm watching a

documentary on survivers of a ship wreck that saw them floating around

the ocean for 20 plus days. One of the survivors died from blood

poisoning that occured due to dehydration.The facts of why someone died

where clear to these people, yet such an observation won't be made in a

hospital settings-cause of death oppurtunistic infection(blood

poisoning) due to dehydration- now find someone that diagnoses that....

tony

-- In infections , Debora Wade

<debbie@...> wrote:

>

> Has anyone here been successful in testing for or irradicating MAP

> (mycobacterium avium paratuberculosis) for Crohn's? I read through

the

> archives, but didn't see anyone actually trying the triple or

quadruple

> antibiotic therapy. Does anyone know of a natural alternative?

>

[Guest guest]

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]

> 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?

I don't recall any Crohn's patients reporting results on this list. We

once had one stop by, but I don't know if he ever tried any treatment.

If you want to find a doctor who will treat Crohn's with a heavy

combination of antibiotics, email me, I know someone who can probably

help you with that. You'd probably have to travel to somewhere (in the

US) for at least one in-person appointment.

I have to agree with Tony... I personally doubt there would be any

realistic non-pharmaceutical way of attacking MAP or other bacteria

that might be responsible for a given case of Crohn's. Look at the many

trials using 2 antibacterials - some were successful, some were totally

unsuccessful. None were remotely as sucessful as the 3- or 4-drug

Borody regime. This shows that the putative bacteria are extremely

difficult to kill. A very low growth rate is one possible, nicely-

precedented explanation for their hardiness, and the relative

ineffectiveness of anything short of a heavy combination antibacterial

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

in Crohn's, that I know of. The M avium complex (MAP), of which M avium

var paratuberculosis is a special subset, causes pulmonary (lung)

infections in both AIDS and non-AIDS patients, and is very difficult to

treat. (In fact, there is no proven bacterial infection as hard to

treat, unless you count strains that have many acquired drug

resistances, like MRSA and MDR tuberculosis, but MAC, to the best of my

knowledge, rarely or never has acquired drug resistances.) Especially

in non-AIDS patients, who are usually elderly and/or have other

pulmonary problems, it's pretty common for pulmonary MAC infections to

persist or even progress despite the three-, four-, and even six-drug

regimens that are used for multiple years. But a large proportion of

pulmonary MAC cases clear up just fine, and it is uncontroversial that

it is a bacterial disease, so everyone who has it is treated.

[Guest guest]

Penny

They are using the tb drugs ethambutol, rifampin, isonazid and a few

others they can use in combo TB therapies.. I actually rang the

hospital and spoke to someones secretary, or someone in the know, but

from an administrative position not a scientific position.

tony

-- In infections , Penny Houle

<pennyhoule@...> wrote:

>

> Debbie,

>

> Do you know which 4 antibiotics are being used?

>

> penny

>

> Barb 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]

Debra'

Do you see that initial improvement and prolonged therapy DON " T ADD

UP?You can't do antibiotic therapy of any nature without some sort of

guidance.Basically I find it rediculous for someone to be taking a

drug that's not hitting the mark.

-- In infections , Debora Wade

<debbie@...> wrote:

>

>

> 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]

> The large trial was finished in 2004.

Do you have the citation? I'd love to read it.

> 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.

Those complaints strike me as highly valid.

> 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.

That's more than possible, and certainly a potential input when

choosing drugs. Still, I would emphasize the possibility that that

might not happen. Resistance is an evolutionary change in a

population: it happens because of selection, and then regrowth from

the selected subset. To carry out the selection, you need to kill the

majority of non-resistant bugs, so that of all the bugs left, most

are resistant. For an average drug (it varies somewhat between

drugs), only about 1 out of 10,000,000 bugs has a spontaneous

abnormality confering heritable resistance. If you took 2 weeks of

clarithromycin for a cold, you might have killed some Crohn's bugs.

But since that use probably didn't have much impact on your Crohn's,

it follows that you did not kill many of them. Certainly not as many

as 99%. If you killed 99% you would see a major impact on your

disease. Yet the frequency of resistant bugs would now, still, be

only 1 in 100,000. Therefore, 99.999% of your bug load would still be

suceptible to clarithromycin.

On the other hand, if you used clarithromycin and had, say, an 80%

disease improvement, then stopped it and relapsed, that would be more

concerning, as that might(?) correspond to a 99.99% kill-off of the

bugs; maybe even more. That might represent a major enrichment in

clarithromycin-resistant bugs. Yet, it is also possible in this

scenario that most of the surviving bugs survived because of their

physiological state (eg, especially slow growth), not because they

have mutations confering clarithromycin resistance. In that case,

clarithromycin could still be perfectly useful. Unfortunately, these

survivors might have genes disposing to a super-slow growth rate, and

those could help their progeny to be somewhat more semi-resistant to

all sorts of antibacterials. But they still wouldn't be any more

resistant to clarithromycin than to anything else. Anyway, hopefully

that wouldn't happen; the ultra-slow-growing subset of cells selected

by treatment might be growing that way not because of their genes

(which are heritable) but because they happen to be in a particularly

noxious microenvironment, which is not heritable and will not be

passed on to their progeny. An example of a particularly noxious

microenvironment is a macrophage with only 3 bugs inside it: that

macrophage will be able to bombard the bugs with noxious chemicals

that impair their growth and life -- whereas a macrophage with 46

bugs inside it is often highly impaired, at least in the case of

tuberculosis.

> Those who are

> diagnosed sooner after their initial infection generally fare the

> best.

That seems to be true in MS and CFS as well, but weakly true - my

casual, crude estimate would be that good outcomes are still only

1.5x or 2x less likely in entrenched disease than they are in fresh

disease.

> speak with the doctors who

> have the most experience in treating their patients.

That's wise. Borody or someone like that has some interviews on the

web I've seen, where he shows his cards as to what he thinks has been

most effective.

> 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.

In practice, this doesn't seem to be a major concern in CFS. The

number of CFSers I am aware of who have really worsened on

antibacterials seems quite low, percentagewise, and as CFS can have

an undulating/irregular natural course, it's anything but clear that

the antibacterials were responsible for such worsening; the opposite

seems more likely. I have never heard of anyone with CFS worsening

sharply within weeks of starting, a scenario in which you could more

realisticly attribute the blame to the antibacterials.

But obviously, some casual observations of a completely different

disease by some dude on the internet doesn't mean much of anything.

Maybe one of the experienced clinicians could enlighten you as to

whether he's seen any cases of people worsening on abx, if you

describe to him/her your experience with the injection.

> > 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

What I meant was that there's no proof that ultra-slow growth causes

the difficulty of treating Crohn's. While I know MAC grows very

slowly, by " slow growth " I mean slow *compared to* it's " maximum

speed, " the fastest it can possibly grow in a test tube in a rich

culture broth. When pulmonary-type MAC are grown at their max rate

(which is a division time of 12 or 20 hours or something), they are

just as suceptible to appropriate antibacterials as are E coli

growing at E coli's max speed, which is ~50x faster than MAC's. Is

MAP any different from other MAC, in this regard?

As for the detection of the bug, I haven't read much but I think some

groups have failed to find it. These controversies are really common

in science. In all fields, different labs sometimes get conflicting

results, and after some years it gets resolved (or doesn't). Many

experiments aren't as highly reproducible between labs as you would

expect. Still, the failure of some labs to find it does lend

significant doubt to the matter.

As for e's disease, I think it is quite a bit more treatable on

the whole than Crohn's, which is one reason people might not accept

it as strong evidence for MAP causition of Crohn's. I posted a couple

reviews on e's here last year which you can dig up with the

search function. My impression from reading them was that e's

could usually be pretty fully suppressed, but that it usually

relapsed after treatment. Still, I don't think I saw data showing

that. Some guy's claim that that is what happens is not the real

thing, only data is the real thing.

> 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.

There are lots of mycobacteria in your lungs and guts right now,

which you inhaled and swallowed today, that belong to harmless

species. Still, MAP is part of the MAC complex, and MAC is a known

pathogen, though a weak one. That fact is a significant bit of

circumstantial evidence for the MAP-Crohn's case.

I think MAC has been found in some healthy normals. Some might educe

that as evidence against MAP causing Crohn's. However, that argument

is absolutely worthless: *billions* of people are asymptomatically

infected with TB and/or H pylori, which are known pathogens.