Re: Re: real big study: genes

[Guest guest]

Wow. This IS kind of big and I'm kind of surprised. I mean, you can almost always get numbers to go your way if you play around with them enough, so I'm surprised they didn't find a way. :-) Or maybe the researchers really didn't have any particular agenda either way? :-) Even if there were genetic predispositions to certain illnesses, I don't think this would automatically indicate "autoimmune" disorders. I wish we'd get rid of that word. It sounds like a problem when it shouldn't be. Our immune systems are always on automatic. Rather than assuming that it sometimes goes whacky for no justifiable reason and just starts attacking itself, why don't we do more research in trying to figure out what triggers it to kick on in the first place? Maybe the researchers would gain valuable information. I'm not saying we shouldn't keep researching how the immune system works or possible malfunctions. What drives me

crazy is the assumption that when it's activated it's not working. The reason that drives me crazy is because it results in these lay people coming up with nutritional type therapies based on a premise which is very possibly faulty (probably faulty, in my view). And those therapies become big news and detract from where our focus should really be. penny dumbaussie2000 <dumbaussie2000@...> wrote: 'I catch plenty of news, sound bites. the problem in my opinion is that you have 1 trillion bacteria that produce toxins that are embedded into your fat cells..And this is not important? or the missing link? in the genetics of things. >> > This is some enormous new disease loci study covering seven common> diseases... 2-3,000 individuals in each group. I don't know if that> makes it the biggest study of it's kind for some of these diseases -> but I'm guessing so, since 50 labs worked on this cooperative.> > I'm posting it for Tony...> > "[...] Case-control comparisons identified 24 independent association>

signals at P < 5e-7: 1 in bipolar disorder, 1 in coronary artery> disease, 9 in Crohn's disease, 3 in rheumatoid arthritis, 7 in type 1> diabetes and 3 in type 2 diabetes. [...] We observed association at> many previously identified loci, and found compelling evidence that> some loci confer risk for more than one of the diseases studied. [...]> The importance of appropriately large samples was confirmed by the> modest effect sizes observed at most loci identified."> > http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html> > Haha, you'll like that last sentence, Tony. Modest effect sizes.> Sounds like no one gene makes a real big difference in any of these> diseases. > > I don't think that rules out the possibility that some of them could>

be autoimmune diseases (in some stronger or weaker sense), as there> are sooo many genes that can influence thresholds for loss of> self-tolerance. But it does tend to make it seem more likely that> something big is missing in the ideas most people have of these diseases.>

[Guest guest]

"Autoimmune" does not mean

"auto" as in "automatic", but "auto" as in "self". Autoimmune disease

is caused by the immune system failing to correctly recognize whether a

particular cell is "self" or "other". So no one is claiming that the

immune system is or is not on automatic, just that it can mistake one's

own cells for invaders. That is also but one aspect of how the immune

system can malfunction. It can refrain from attacking "self" but also

fail to attack "other", or it can go into a vicious circle of

over-activation or ping pong about and be all disregulated.

I work from home (I'm a software developer) so I live day to day in

essentially an identical environment to my severely CFS / MCS spouse,

right down to diet. The mere fact that she can be horribly ill and I

can be reasonably healthy tells me that my immune system is handling

things that hers is either under or over-reacting to, or more

precisely, reacting to in a disorganized manner. Certain antibiotics

are effective for her, but anything that modulates her immune system

and improves the balance between her sympathetic and parasympathetic

nervous system is also helpful. And I don't doubt that if the dynamics

of her gene expression were fully understood, some of it would be found

to be disregulated and in need of correction, too. And we'd be glad

for any legitimate fix on offer.

I think she'd gratefully accept any available help on all three

fronts. In a sense, if we could destroy her multiple infections

without killing her with the die-off, she would be substantially and

perhaps truly cured. In that sense "the bugs" are the culprits. But

if she also has immune system or genetic issues, would she stay that

way? One wonders. As a person who makes a living at consulting, I

always live by the consultant's Prime Directive, which is, "remember

that things are the way they are because they got that way".

Why did my wife become much more ill than her mother, though both were

exposed to the same PBB-tainted milk in the 1970's? Why did other

family members not become sick at all? Why were 90% of Michigan

residents tested in the '70's found to have significant levels of PBB

in their blood, yet the vast majority of them were not symptomatic? To

be more on-topic for this list, why did my wife never really recover

from Mono, but most of the thousands of others who were ill the same

year did? The answers to all of the above questions are NOT "because

everyone else got a more aggressive course of antibiotics than she did"

-- I can assure you.

In my view, we need good work done on all these fronts, and many of us

won't succeed (or at least not permanently) without applying everything

at our disposal. I think your desire to see chronic infections not be

overlooked is good, but it is not a viable strategy all by itself.

--Bob

Penny Houle wrote:

Even if there were genetic predispositions to certain illnesses,

I don't think this would automatically indicate "autoimmune" disorders.

I wish we'd get rid of that word. It sounds like a problem when it

shouldn't be. Our immune systems are always on automatic. Rather than assuming

that it sometimes goes whacky for no justifiable reason

and just starts attacking itself, why don't we do more research in

trying to figure out what triggers it to kick on in the first place?

Maybe the researchers would gain valuable information. I'm not saying

we shouldn't keep researching how the immune system works or possible

malfunctions. W hat drives me crazy is the assumption

that when it's activated it's not working.

The reason that drives me crazy is because it results in these lay

people coming up with nutritional type therapies based on a premise

which is very possibly faulty (probably faulty,

in my view). And those therapies become big news and detract from where

our focus should really be.

penny

dumbaussie2000 <dumbaussie2000 .au>

wrote:

'

I catch plenty of news, sound bites. the problem in my opinion is

that you have 1 trillion bacteria that produce toxins that are

embedded into your fat cells..And this is not important? or the

missing l ink? in the genetics of things.

>

>

> This is some enormous new disease loci study covering seven common

> diseases... 2-3,000 individuals in each group. I don't know if that

> makes it the biggest study of it's kind for some of these diseases

-

> but I'm guessing so, since 50 labs worked on this cooperative.

>

> I'm posting it for Tony...

>

> "[...] Case-control comparisons identified 24 independent

association

> signals at P < 5e-7: 1 in bipolar disorder, 1 in coronary artery

> disease, 9 in Crohn's disease, 3 in rheumatoid arthritis, 7 in

type

1

> diabetes and 3 in type 2 diabetes. [...] We observed association at

> many previously identified loci, and found compelling evidence that

> some loci confer risk for more than one of the diseases studied.

[...]

> The importance of appropriately large samples was confirmed by the

> modest effect sizes observed at most loci identified."

>

> http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

>

> Haha, you'll like that last sentence, Tony. Modest effect sizes.

> Sounds like no one gene makes a real big difference in any of these

> diseases.

>

> I don't think that rules out the possibility that some of them

could

> be autoimmune diseases (in some stronger or weaker sense), as there

> are sooo many genes that can influence thresholds for loss of

> self-tolerance. But it does tend to make it seem more likely that

> something big is missing in the ideas most people have of these

diseases.

>

[Guest guest]

I know it's not "auto" as in "automatic" but that's the result...an automatic assumption that what you're saying is correct because everyone's been brainwashed to accept it "automatically" as a truth. Even you assume that because your wife is sick and you're not, that it must be her immune system's fault. No real understanding of how infection works. The whole thing is ridiculous. Not that long ago MS was a "psychiatric disorder". Ulcers were a "psychiatric disorder". As far as I'm concerned, "autoimmunity" is about as viable and has as much supportable basis as the pschiatric dxs did. Even today, 50% of docs don't prescribe abx, despite the evidence. Someday people are going to look really stupid when it comes to this whole thing, just like those earlier experts do. And re: infection being the "only strategy". Right now, it's not a strategy at all (with the

exception of lyme disease). Other than a few lone renegades out there in the wilderness, there's been zero development toward the understanding of bacteria's role in these mysterious "autoimmune" illnesses, or how to deal with them effectively. Ask yourself. How many other groups are out there like this one? A group which supports the idea that "autoimmune" disease has an infectious/inflammatory basis? That's the point of this group, because there is very little interest or support anywhere else. There are 6 bazillion people on forums blindly accepting anbd supporting autoimmunity. They don't need more support. What they need is someone to snap them out of their complacency. penny Bob Grommes <bob@...> wrote: "Autoimmune" does not mean "auto" as in "automatic", but "auto" as in "self". Autoimmune disease is caused by the immune system failing to correctly recognize whether a particular cell is "self" or "other". So no one is claiming that the immune system is or is not on automatic, just that it can mistake one's own cells for invaders. That is also but one aspect of how the immune system can malfunction. It can refrain from attacking "self" but also fail to attack "other", or it can go into a vicious circle of over-activation or ping pong about and be all disregulated.I work

from home (I'm a software developer) so I live day to day in essentially an identical environment to my severely CFS / MCS spouse, right down to diet. The mere fact that she can be horribly ill and I can be reasonably healthy tells me that my immune system is handling things that hers is either under or over-reacting to, or more precisely, reacting to in a disorganized manner. Certain antibiotics are effective for her, but anything that modulates her immune system and improves the balance between her sympathetic and parasympathetic nervous system is also helpful. And I don't doubt that if the dynamics of her gene expression were fully understood, some of it would be found to be disregulated and in need of correction, too. And we'd be glad for any legitimate fix on offer.I think she'd gratefully accept any available help on all three fronts. In a sense, if we could destroy her multiple infections without killing her with the die-off,

she would be substantially and perhaps truly cured. In that sense "the bugs" are the culprits. But if she also has immune system or genetic issues, would she stay that way? One wonders. As a person who makes a living at consulting, I always live by the consultant's Prime Directive, which is, "remember that things are the way they are because they got that way".Why did my wife become much more ill than her mother, though both were exposed to the same PBB-tainted milk in the 1970's? Why did other family members not become sick at all? Why were 90% of Michigan residents tested in the '70's found to have significant levels of PBB in their blood, yet the vast majority of them were not symptomatic? To be more on-topic for this list, why did my wife never really recover from Mono, but most of the thousands of others who were ill the same year did? The answers to all of the above questions are NOT "because everyone else

got a more aggressive course of antibiotics than she did" -- I can assure you.In my view, we need good work done on all these fronts, and many of us won't succeed (or at least not permanently) without applying everything at our disposal. I think your desire to see chronic infections not be overlooked is good, but it is not a viable strategy all by itself.--BobPenny Houle wrote: Even if there were genetic predispositions to certain illnesses, I don't think this would automatically indicate "autoimmune" disorders. I wish we'd get rid of that word. It sounds like a problem when it shouldn't be. Our immune systems are always on automatic. Rather than assuming that it sometimes goes whacky for no justifiable reason and just starts attacking itself, why don't we do more research

in trying to figure out what triggers it to kick on in the first place? Maybe the researchers would gain valuable information. I'm not saying we shouldn't keep researching how the immune system works or possible malfunctions. W hat drives me crazy is the assumption that when it's activated it's not working. The reason that drives me crazy is because it results in these lay people coming up with nutritional type therapies based on a premise which is very possibly faulty (probably faulty, in my view). And those therapies become big news and detract from where our focus should really be. penny dumbaussie2000 <dumbaussie2000 .au> wrote: 'I catch plenty of news, sound bites. the problem in my opinion is that you have 1 trillion bacteria that produce toxins that are embedded into your fat cells..And this is not important? or the missing l ink? in the genetics of things. >> > This is some enormous new disease loci study covering seven common> diseases... 2-3,000 individuals in each group. I don't know if that> makes it the biggest study of it's kind for some of these diseases -> but I'm guessing so, since 50 labs worked on this cooperative.> > I'm posting it for Tony...> > "[...] Case-control comparisons identified 24 independent association> signals at P < 5e-7: 1 in bipolar disorder, 1 in coronary

artery> disease, 9 in Crohn's disease, 3 in rheumatoid arthritis, 7 in type 1> diabetes and 3 in type 2 diabetes. [...] We observed association at> many previously identified loci, and found compelling evidence that> some loci confer risk for more than one of the diseases studied. [...]> The importance of appropriately large samples was confirmed by the> modest effect sizes observed at most loci identified."> > http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html> > Haha, you'll like that last sentence, Tony. Modest effect sizes.> Sounds like no one gene makes a real big difference in any of these> diseases. > > I don't think that rules out the possibility that some of them could> be autoimmune diseases (in some stronger or weaker sense),

as there> are sooo many genes that can influence thresholds for loss of> self-tolerance. But it does tend to make it seem more likely that> something big is missing in the ideas most people have of these diseases.>

[Guest guest]

Penny,

You tend to fixate on "fault". If I break my leg, I can truthfully say

that my femur is broken. That doesn't make it my femur's fault, or

imply by association that I am a defective person. On the other hand,

it doesn't change the fact of what the root problem is. I would not

have a primary need for antibiotics, I'd need the bone set and the limb

immobilized so that it can heal. If it's a compound fracture that

lacerated its way out of my leg, I might need abx to prevent a

secondary infection, of course. But by your reasoning I would need a

course of antibiotics alone because after all it's not my femur's fault.

I understand the impulse that motivates your single-mindedness, and

indeed that might for all I know be the best way to go for most

people. Rip that iPod out of their ears and slap 'em upside the head.

However, for thinking people, it doesn't impress. I'm in a place where

I'm looking for multidimensional thinking, and approaching the problem

from all possible angles. Any one approach by itself simply won't

work. Been there, done that, got the T-shirt.

Nevertheless, I glean some good insight here from time to time and

appreciate the discussion.

Cheers,

--Bob

Penny Houle wrote:

I know it's not "auto" as in "automatic" but that's the

result...an automatic assumption that what you're saying is correct

because everyone's been brainwashed to accept it "automatically" as a

truth. Even you assume that because your wife is sick and you're not,

that it must be her immune system's fault. No real understanding of how

infection works.

The whole thing is ridiculous. Not that long ago MS was a

"psychiatric disorder". Ulcers were a "psychiatric disorder". As far as

I'm concerned, "autoimmunity" is about as viable and has as much

supportable basis as the pschiatric dxs did. Even today, 50% of docs

don't prescribe abx, despite the evidence. Someday people are going to

look really stupid when it comes to this whole thing, just like those

earlier experts do.

And re: infection being the "only strategy". Right now, it's not

a strategy at all ( with the exception of lyme disease). Other than a

few lone renegades out there in the wilderness, there's been zero

development toward the understanding of bacteria's role in these

mysterious "autoimmune" illnesses, or how to deal with them

effectively.

Ask yourself. How many other groups are out there like this one?

A group which supports the idea that "autoimmune" disease has an

infectious/inflammatory basis? That's the point of this group,

because there is very little interest or support anywhere else. There

are 6 bazillion people on forums blindly accepting anbd supporting

autoimmunity. They don't need more support. What they need is someone

to snap them out of their complacency.

penny

Bob Grommes <bobbobgrommes> wrote:

"Autoimmune" does

not mean "auto" as in "automatic", but "auto" as in "self". Autoimmune

disease is caused by the immune system failing to correctly recognize

whether a particular cell is "self" or "other". So no one is claiming

that the immune system is or is not on automatic, just that it can

mistake one's own cells for invaders. That is also but one aspect of

how the immune system can malfunction. It can refrain from attacking

"self" but also fail to attack "other", or it can go into a vicious

circle of over-activation or ping pong about and be all disregulated.

I work from home (I'm a software developer) so I live day to day in

essentially an identical environment to my severely CFS / MCS spouse,

right down to diet. The mere fact that she can be horribly ill and I

can be reasonably healthy tells me that my immune system is handling

things that hers is either under or over-reacting to, or more

precisely, reacting to in a disorganized manner. Certain antibiotics

are effective for her, but anything that modulates her immune system

and improves the balance between her sympathetic and parasympathetic

nervous system is also helpful. And I don't doubt that if the dynamics

of her gene expression were fully understood, some of it would be found

to be disregulated and in need of correction, too. And we'd be glad

for any legitimate fix on offer.

I think she'd gratefully accept any available help on all three

fronts. In a sense, if we could destroy her multiple infections

without killing her with the die-off, she would be substantially and

perhaps truly cured. In that sense "the bugs" are the culprits. But

if she also has immune system or genetic issues, would she stay that

way? One wonders. As a person who makes a living at consulting, I

always live by the consultant's Prime Directive, which is, "remember

that things are the way they are because they got that way".

Why did my wife become much more ill than her mother, though both were

exposed to the same PBB-tainted milk in the 1970's? Why did other

family members not become sick at all? Why were 90% of Michigan

residents tested in the '70's found to have significant levels of PBB

in their blood, yet the vast majority of them were not symptomatic? To

be more on-topic for this list, why did my wife never really recover

from Mono, but most of the thousands of others who were ill the same

year did? The answers to all of the above questions are NOT "because

everyone else got a more aggressive course of antibiotics than she did"

-- I can assure you.

In my view, we need good work done on all these fronts, and many of us

won't succeed (or at least not permanently) without applying everything

at our disposal. I think your desire to see chronic infections not be

overlooked is good, but it is not a viable strategy all by itself.

--Bob

Penny Houle wrote:

Even if there were genetic predispositions to certain

illnesses, I don't think this would automatically indicate "autoimmune"

disorders. I wish we'd get rid of that word. It sounds like a problem

when it shouldn't be. Our immune systems are always on automatic.

Rather than assuming that it sometimes goes

whacky for no justifiable reason and just starts attacking itself, why

don't we do more resear ch in trying to figure out what triggers it to

kick on in the first place? Maybe the researchers would gain valuable

information. I'm not saying we shouldn't keep researching how the

immune system works or possible malfunctions. W hat drives me crazy is

the assumption that when it's activated it's

not working. The reason that drives me

crazy is because it results in these lay people coming up with

nutritional type therapies based on a premise which is very possibly

faulty (probably faulty, in my view). And

those therapies become big news and detract from where our focus should

really be.

penny

dumbaussie2000 <dumbaussie2000 .au>

wrote:

'

I catch plenty of news, sound bites. the problem in my opinion is

that you have 1 trillion bacteria that produce toxins that are

embedded into your fat cells..And this is not important? or the

missing l ink? in the genetics of things.

>

>

> This is some enormous new disease loci study covering seven common

> diseases... 2-3,000 individuals in each group. I don't know if that

> makes it the biggest study of it's kind for some of these diseases

-

> but I'm guessing so, since 50 labs worked on this cooperative.

>

> I'm posting it for Tony...

>

> "[...] Case-control comparisons identified 24 independent

association

> signals at P < 5e-7: 1 in bipolar disorder, 1 in coronary artery

> disease, 9 in Crohn's disease, 3 in rheumatoid arthritis, 7 in

type

1

> diabetes and 3 in type 2 diabetes. [...] We observed association at

> many previously identified loci, and found compelling evidence that

> some loci confer risk for more than one of the diseases studied.

[...]

> The importance of appropriately large samples was confirmed by the

> modest effect sizes observed at most loci identified."

>

> http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

>

> Haha, you'll like that last sentence, Tony. Modest effect sizes.

> Sounds like no one gene makes a real big difference in any of these

> diseases.

>

> I don't think that rules out the possibility that some of them

could

> be autoimmune diseases (in some stronger or weaker sense), as there

> are sooo many genes that can influence thresholds for loss of

> self-tolerance. But it does tend to make it seem more likely that

> something big is missing in the ideas most people have of these

diseases.

>

[Guest guest]

HI TONY. I HEAR YOU. I

think you misunderstand though. We believe toxemia is her main

problem, actually. I don't believe her immune system is attacking her

and never said I did. I was just having a conversation about auto

immune disease. My wife would however agree that her immune system is

malfunctioning. It is severely up-regulated much of the time and

over-reacts to most everything. It doesn't know when / how to shut

off. Seasonally, in the fall, it tends to down-regulate so that she

catches every sniffle in the air. That is clearly abnormal. It's

merely an observation about how one of her body systems (doesn't) work,

though; it's not a judgment about her, or the reality of her symptoms

or suffering.

I would take personal offense to the suggestion that I think her

symptoms "aren't real", except that I have no idea how you could

rationally draw such a conclusion from anything I've ever written about

her. Her symptoms are all too real. I think your problem is that you

don't see anything as real unless it's bacterially caused, and you

therefore assume that I don't think her symptoms are real because I

don't believe they are 100% the result of infection. For what it's

worth, though, we are working primarily on the infectious angle and I

would credit pathogens for 90% of her symptoms even if I think the

organisms are opportunistic because of some completely different cause

-- probably in my opinion environmental poisoning combined with genetic

vulnerability. The latter is water over the dam, of course, and the

pathogens are something we can actually do something about. My

greatest fear is that we will not be able to permanently banish them if

we can never find and fix the underlying cause, however.

The main problem with aggressive antibiotic therapy is that her burden

of pathogens is so high that any significant progress in killing them

creates a toxic storm. Or what you would call toxemia. We have

actually worked out a protocol with Biaxin that sort of works for her

and are currently pursuing it, but it's a white-knuckle balancing act.

Doing it wrong without consideration of all the factors involved, only

makes her more miserable and could well kill her. Doing it right

brings relief and something vaguely resembling quality of life. We are

slowly figuring out what's right for her.

--Bob

dumbaussie2000 wrote:

Bob

That is rediculous.. When you attempt therapy you have to know what

your going after, been there, done that, failed, is alway's the case

for people with a simple urinry tract infection. Some have been thru

these episodes on upto 18 occasions(thru there medical history) and

still haven't cleared them.

You've also got to have a look at what is going on in your own case-

YOUR DESCRIBING YOUR WIFE AS SOMEONE THAT'S BEING CONSTANTLY THRASHED

TO WITHIN AN INCH OF HER LIFE AND YOUR SITTING HERE COMFORTABLE THAT

IT MAY BE MULTIFACTORAL- AND POSSABLY HER IMMUNE SYSTEM ATTACKING HER?

DO YOU REALISE THAT MOST PEOPLE HAVE ONE THING OCCUR THAT TIPS THEM

OVER-MONO-SURGERY -INJURY-WHIPLASH-COURSE OF ANTIBIOTICS-TICK

BITE

(ONE FOR PAULA) and you feel comfortable that her epsiodes of what

should be best described as TOXEMIA aren't real... it's all due to an

immune system that's gone whacky.

Why don't you ask your wife while she's suffering if she would accept

TOXEMIA as the best explanation for her ilness- we don't need you to

tell us ask her...She may be the one that opens your eyes or maybe

you should look at what comes out after a historectomy-it's pretty

obvious that something needs better explaining when things come out

that have been giving long term pain and look like someone's attacked

part of the anatomy with a blowtorch.

tony

> >> >

> >> >

> >> > This is some enormous new disease loci study

covering

seven

> >> common

> >> > diseases... 2-3,000 individuals in each group. I

don't

know

> >> if that

> >> > makes it the biggest study of it's kind for some of

these

> >> diseases -

> >> > but I'm guessing so, since 50 labs worked on this

cooperative.

> >> >

> >> > I'm posting it for Tony...

> >> >

> >> > "[...] Case-control comparisons identified 24

independent

> >> association

> >> > signals at P < 5e-7: 1 in bipolar disorder, 1 in

coronary

> >> artery

> >> > disease, 9 in Crohn's disease, 3 in rheumatoid

arthritis, 7

> >> in type

> >> 1

> >> > diabetes and 3 in type 2 diabetes. [...] We observed

> >> association at

> >> > many previously identified loci, and found compelling

> >> evidence that

> >> > some loci confer risk for more than one of the

diseases

> >> studied.

> >> [...]

> >> > The importance of appropriately large samples was

confirmed

> >> by the

> >> > modest effect sizes observed at most loci

identified."

> >> >

> >> >

> >>

http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >>

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

> >> >

> >> > Haha, you'll like that last sentence, Tony. Modest

effect

> >> sizes.

> >> > Sounds like no one gene makes a real big difference

in

any

> >> of these

> >> > diseases.

> >> >

> >> > I don't think that rules out the possibility that

some

of

> >> them could

> >> > be autoimmune diseases (in some stronger or weaker

sense),

> >> as there

> >> > are sooo many genes that can influence thresholds

for

loss of

> >> > self-tolerance. But it does tend to make it seem more

> >> likely that

> >> > something big is missing in the ideas most people

have

of

> >> these

> >> diseases.

> >> >

> >>

> >>

> >

> >

>

[Guest guest]

Bob, from my perspective, it's the autoimmunists who fixate on "fault". Blaming the immune system for everything. It's frustrating to me that so many can't see how one-sided this thing has been. Any doctor, any patient you talk to will buy the "autoimmunity" supposition. Very few out there will even consider an infectious basis of disease, despite all kinds of evidence to the contrary. I'll say it again about the ulcers. Doctors still refuse to prescribe abx for ulcers, despite the research supporting it. Do you know how many researchers who do believe in an infectious basis have given up in frustration, or gone underground and quietly try to just help a few people? This is not good for our community. pennyBob Grommes <bob@...> wrote: Penny,You tend to fixate on "fault". If I break my leg, I can truthfully say that my femur is broken. That doesn't make it my femur's fault, or imply by association that I am a defective person. On the other hand, it doesn't change the fact of what the root problem is. I would not have a primary need for antibiotics, I'd need the bone set and the limb immobilized so that it can heal. If it's a compound fracture that lacerated its way out of my leg, I might need abx to prevent a secondary infection, of course. But by your reasoning I would need a course of antibiotics alone because after all

it's not my femur's fault.I understand the impulse that motivates your single-mindedness, and indeed that might for all I know be the best way to go for most people. Rip that iPod out of their ears and slap 'em upside the head. However, for thinking people, it doesn't impress. I'm in a place where I'm looking for multidimensional thinking, and approaching the problem from all possible angles. Any one approach by itself simply won't work. Been there, done that, got the T-shirt.Nevertheless, I glean some good insight here from time to time and appreciate the discussion.Cheers,--BobPenny Houle wrote: I know it's not "auto" as in "automatic" but that's the result...an automatic assumption that what you're saying is correct because everyone's been brainwashed to accept

it "automatically" as a truth. Even you assume that because your wife is sick and you're not, that it must be her immune system's fault. No real understanding of how infection works. The whole thing is ridiculous. Not that long ago MS was a "psychiatric disorder". Ulcers were a "psychiatric disorder". As far as I'm concerned, "autoimmunity" is about as viable and has as much supportable basis as the pschiatric dxs did. Even today, 50% of docs don't prescribe abx, despite the evidence. Someday people are going to look really stupid when it comes to this whole thing, just like those earlier experts do. And re: infection being the "only strategy". Right now, it's not a strategy at all ( with the exception of lyme disease). Other than a few lone renegades out there in the wilderness, there's been zero development toward the understanding of bacteria's role

in these mysterious "autoimmune" illnesses, or how to deal with them effectively. Ask yourself. How many other groups are out there like this one? A group which supports the idea that "autoimmune" disease has an infectious/inflammatory basis? That's the point of this group, because there is very little interest or support anywhere else. There are 6 bazillion people on forums blindly accepting anbd supporting autoimmunity. They don't need more support. What they need is someone to snap them out of their complacency. penny Bob Grommes <bobbobgrommes> wrote: "Autoimmune" does not mean "auto" as in "automatic", but "auto" as in "self". Autoimmune

disease is caused by the immune system failing to correctly recognize whether a particular cell is "self" or "other". So no one is claiming that the immune system is or is not on automatic, just that it can mistake one's own cells for invaders. That is also but one aspect of how the immune system can malfunction. It can refrain from attacking "self" but also fail to attack "other", or it can go into a vicious circle of over-activation or ping pong about and be all disregulated.I work from home (I'm a software developer) so I live day to day in essentially an identical environment to my severely CFS / MCS spouse, right down to diet. The mere fact that she can be horribly ill and I can be reasonably healthy tells me that my immune system is handling things that hers is either under or over-reacting to, or more precisely, reacting to in a disorganized manner. Certain antibiotics are effective for her, but anything that modulates her

immune system and improves the balance between her sympathetic and parasympathetic nervous system is also helpful. And I don't doubt that if the dynamics of her gene expression were fully understood, some of it would be found to be disregulated and in need of correction, too. And we'd be glad for any legitimate fix on offer.I think she'd gratefully accept any available help on all three fronts. In a sense, if we could destroy her multiple infections without killing her with the die-off, she would be substantially and perhaps truly cured. In that sense "the bugs" are the culprits. But if she also has immune system or genetic issues, would she stay that way? One wonders. As a person who makes a living at consulting, I always live by the consultant's Prime Directive, which is, "remember that things are the way they are because they got that way".Why did my wife become much more ill than her mother, though both

were exposed to the same PBB-tainted milk in the 1970's? Why did other family members not become sick at all? Why were 90% of Michigan residents tested in the '70's found to have significant levels of PBB in their blood, yet the vast majority of them were not symptomatic? To be more on-topic for this list, why did my wife never really recover from Mono, but most of the thousands of others who were ill the same year did? The answers to all of the above questions are NOT "because everyone else got a more aggressive course of antibiotics than she did" -- I can assure you.In my view, we need good work done on all these fronts, and many of us won't succeed (or at least not permanently) without applying everything at our disposal. I think your desire to see chronic infections not be overlooked is good, but it is not a viable strategy all by itself.--BobPenny Houle wrote: Even if there were genetic predispositions to certain illnesses, I don't think this would automatically indicate "autoimmune" disorders. I wish we'd get rid of that word. It sounds like a problem when it shouldn't be. Our immune systems are always on automatic. Rather than assuming that it sometimes goes whacky for no justifiable reason and just starts attacking itself, why don't we do more resear ch in trying to figure out what triggers it to kick on in the first place? Maybe the researchers would gain valuable information. I'm not saying we shouldn't keep researching how the immune system works or possible malfunctions. W hat drives me crazy is the assumption that when it's activated it's not working. The reason that drives me crazy is because it results in these

lay people coming up with nutritional type therapies based on a premise which is very possibly faulty (probably faulty, in my view). And those therapies become big news and detract from where our focus should really be. penny dumbaussie2000 <dumbaussie2000 .au> wrote: 'I catch plenty of news, sound bites. the problem in my opinion is that you have 1 trillion bacteria that produce toxins that are embedded into your fat cells..And this is not important? or the missing l ink? in the genetics of things. >> > This is some enormous new disease loci study covering seven common> diseases... 2-3,000 individuals in each group. I don't know if that> makes it the biggest study of it's kind for some of these diseases -> but I'm guessing so, since 50 labs worked on this cooperative.> > I'm posting it for Tony...> > "[...] Case-control comparisons identified 24 independent association> signals at P < 5e-7: 1 in bipolar disorder, 1 in coronary artery> disease, 9 in Crohn's disease, 3 in rheumatoid arthritis, 7 in type 1> diabetes and 3 in type 2 diabetes. [...] We observed association at> many previously identified loci, and found compelling evidence that> some loci confer risk for more than one of the diseases studied. [...]> The importance of appropriately large samples was confirmed by the> modest effect sizes

observed at most loci identified."> > http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html> > Haha, you'll like that last sentence, Tony. Modest effect sizes.> Sounds like no one gene makes a real big difference in any of these> diseases. > > I don't think that rules out the possibility that some of them could> be autoimmune diseases (in some stronger or weaker sense), as there> are sooo many genes that can influence thresholds for loss of> self-tolerance. But it does tend to make it seem more likely that> something big is missing in the ideas most people have of these diseases.>

[Guest guest]

What's causing the toxemia is

chronic multiple infections, exacerbated by the natural consequences of

die off when you try to deal with the infections, and since she's

positive for cpn, she probably has secondary porphyria as well. The

solution in her particular case seems to be to push a lot of IV

magnesium plus as much Biaxin as she can handle. That's making a very

long story short and pretty much ignoring the whole MCS problem, which

is huge. But over-simplification is what you like to do, so maybe

putting it into a couple of sentences like that helps you.

I'm only interested in what allowed those infections to take hold in

the first place, so we're not bailing the ship with a leaky bucket. I

want to eradicate the pathogens, but then I want them to STAY that

way. If she needs abx for the rest of her life to keep them down, that

would not be an optimal solution, indeed, it would really be a

symptomatic treatment and not a cure.

--Bob

dumbaussie2000 wrote:

Bob

I threw my last post at you because it just bounced around my head

that all I knew was your wife was being thrashed to within an inch of

her life.I call this TOXEMIA, you somewhat agree..And now for some

fuked up reason you still think there's more to the puzzle. Try

dehydration from long term inflammation due to toxemia. Try low blood

volume from the same set of circumstances..What do you think long

term inflmammtion/low blood volume/dehydration/followed by

mineral

inbalances provides? Perfectly functioning organs?A nice glowing head

of hair?It provides a managery that if you try an interpret will take

a life timewith no answers..

BOB GO BACK AND DISCOVER WHAT IS CAUSING THE TOXEMIA IN YOUR WIFES

CASE......and stop feeding us it's a lot of things causing this ONE

problem..

tony

> > > >> >

> > > >> >

> > > >> > This is some enormous new disease loci

study covering

> > seven

> > > >> common

> > > >> > diseases... 2-3,000 individuals in each

group. I don't

> > know

> > > >> if that

> > > >> > makes it the biggest study of it's kind

for some of

> > these

> > > >> diseases -

> > > >> > but I'm guessing so, since 50 labs worked

on this

> > cooperative.

> > > >> >

> > > >> > I'm posting it for Tony...

> > > >> >

> > > >> > "[...] Case-control comparisons identified

24

> > independent

> > > >> association

> > > >> > signals at P < 5e-7: 1 in bipolar

disorder, 1 in

> > coronary

> > > >> artery

> > > >> > disease, 9 in Crohn's disease, 3 in

rheumatoid

> > arthritis, 7

> > > >> in type

> > > >> 1

> > > >> > diabetes and 3 in type 2 diabetes. [...]

We observed

> > > >> association at

> > > >> > many previously identified loci, and found

compelling

> > > >> evidence that

> > > >> > some loci confer risk for more than one of

the diseases

> > > >> studied.

> > > >> [...]

> > > >> > The importance of appropriately large

samples was

> > confirmed

> > > >> by the

> > > >> > modest effect sizes observed at most loci

identified."

> > > >> >

> > > >> >

> > > >>

> >

http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

> > > >>

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

>

> > > >> >

> > > >> > Haha, you'll like that last sentence,

Tony. Modest

> > effect

> > > >> sizes.

> > > >> > Sounds like no one gene makes a real big

difference in

> > any

> > > >> of these

> > > >> > diseases.

> > > >> >

> > > >> > I don't think that rules out the

possibility that some

> > of

> > > >> them could

> > > >> > be autoimmune diseases (in some stronger

or weaker

> > sense),

> > > >> as there

> > > >> > are sooo many genes that can influence

thresholds for

> > loss of

> > > >> > self-tolerance. But it does tend to make

it seem more

> > > >> likely that

> > > >> > something big is missing in the ideas most

people have

> > of

> > > >> these

> > > >> diseases.

> > > >> >

> > > >>

> > > >>

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Tony,

You talk in circles and put words in my mouth. I never said or implied

that her infection has been "taken care of". Where do you get this

stuff from ??? Biaxin just happens to be the first abx we have found

that she can tolerate taking for anything resembling an extended period

of time. If she could take 100 times what she's taking, and take a

dozen different things at once, she would gladly do it.

You also assume way too much. You don't know the situation on the

ground here, the limitations we are forced to work within.

To quote the Hal 9000 computer, "I'm sorry, Tony, this conversation can

serve no purpose anymore."

--Bob

dumbaussie2000 wrote:

Bob you don't understand nor are trying to understand

infections.My

best friends father has been dealing with a UTI for 20 years he

originally had his bladder removed years earlier for cancerous

reasons.Your here trying to teach us that it's not the infection

part, that's been taken care of, its the other bits?just take a step

back and get your head around biaxin is only managing a few symptoms

of the infection- it's just denting the surface of the real

underlying infectious problem ..Bob you need 100 times the amount of

penicillin or other drug offered up to take care of an infectious

arthritis.....tony

> > > > > >> >

> > > > > >> >

> > > > > >> > This is some enormous new

disease loci study covering

> > > > seven

> > > > > >> common

> > > > > >> > diseases... 2-3,000 individuals

in each group. I don't

> > > > know

> > > > > >> if that

> > > > > >> > makes it the biggest study of

it's kind for some of

> > > > these

> > > > > >> diseases -

> > > > > >> > but I'm guessing so, since 50

labs worked on this

> > > > cooperative.

> > > > > >> >

> > > > > >> > I'm posting it for Tony...

> > > > > >> >

> > > > > >> > "[...] Case-control comparisons

identified 24

> > > > independent

> > > > > >> association

> > > > > >> > signals at P < 5e-7: 1 in

bipolar disorder, 1 in

> > > > coronary

> > > > > >> artery

> > > > > >> > disease, 9 in Crohn's disease, 3

in rheumatoid

> > > > arthritis, 7

> > > > > >> in type

> > > > > >> 1

> > > > > >> > diabetes and 3 in type 2

diabetes. [...] We observed

> > > > > >> association at

> > > > > >> > many previously identified loci,

and found compelling

> > > > > >> evidence that

> > > > > >> > some loci confer risk for more

than one of the diseases

> > > > > >> studied.

> > > > > >> [...]

> > > > > >> > The importance of appropriately

large samples was

> > > > confirmed

> > > > > >> by the

> > > > > >> > modest effect sizes observed at

most loci identified."

> > > > > >> >

> > > > > >> >

> > > > > >>

> > > >

> >

http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

> > > >

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

>

> > > > > >>

> > > >

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

> > > >

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

>

> > >

> > > > > >> >

> > > > > >> > Haha, you'll like that last

sentence, Tony. Modest

> > > > effect

> > > > > >> sizes.

> > > > > >> > Sounds like no one gene makes a

real big difference in

> > > > any

> > > > > >> of these

> > > > > >> > diseases.

> > > > > >> >

> > > > > >> > I don't think that rules out the

possibility that some

> > > > of

> > > > > >> them could

> > > > > >> > be autoimmune diseases (in some

stronger or weaker

> > > > sense),

> > > > > >> as there

> > > > > >> > are sooo many genes that can

influence thresholds for

> > > > loss of

> > > > > >> > self-tolerance. But it does tend

to make it seem more

> > > > > >> likely that

> > > > > >> > something big is missing in the

ideas most people have

> > > > of

> > > > > >> these

> > > > > >> diseases.

> > > > > >> >

> > > > > >>

> > > > > >>

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

She can't tolerate Zithro at

all. Strangely, aside from a massive cytokine storm, the symptoms are

what we associate with mobilization of mercury: dark depression and

emotional lability, which in her case are particularly striking because

that is so contrary to her fundamental nature.

Tried mino once, tore her stomach up right away and took months to

recover. These kinds of atypical responses make abx really challenging.

Biaxin brings about promising clinical results but is hard on the

stomach; even so she managed a three week course which for her is a

huge accomplishment. And then the doctor tried adding Ceftin.

Ceftin has been tolerated fine in the past by itself, though it didn't

produce clinical results one way or the other. But combined with

Biaxin, Ceftin produced an immediate heavy die off of something. The

toxins overwhelmed her liver, liver enzymes went through the roof, and

coincidentally or not, she threw a gall stone (completely new problem

-- whoopee).

At this point one of her doctors is convinced the gall bladder needs to

go, that it's a locus of infection and in any case should be removed

while it's elective, not wait until it's a crisis. He wants to

stabilize her for a couple of months and then do the laproscopic

procedure to take it out. The other doctor is more conservative and

doesn't recommend attempting surgery unless she has another attack. He

puts the odds of such an attack at 20%.

Unless she has another attack, we are going to move heaven and earth to

avoid the knife because with the severe MCS, the combination of a

hospital stay and anesthesia could well run her into the ground, if not

do her in altogether. For now, she is just starting the Biaxin again

by itself.

--Bob

pjeanneus wrote:

Bob,

I don't know the answers but have a couple of thoughts. One is that a

lot of us seem to respond to Zithromax and not Biaxin. I don't know

why. It is just true.

The other is an odd experience I had a couple of weeks ago. You know

I have the strange 1 year headache which is probably caused by MRSA

which has gotten into my sinuses and head. Well, I used Bactroban

swabs and Xylotol spray 2 weeks ago. In two days I had swollen

glands, sore throat and a low grade fever. Oops.

My wonderful doctor who tries to help me sort things out suggested I

just use the Xylotol and see what happens. So I am starting back on

that today.

All of that to say I hear you when you say your wife can't tolerate

massive combos and doses of various antibiotics.

We've all got to hang together and keep searching for solutions. I

still believe they are out there.

a Carnes - back from Zion

>

> HI TONY. I HEAR YOU. I think you misunderstand though. We

believe

> toxemia is her main problem, actually. I don't believe her immune

> system is attacking her and never said I did. I was just having a

> conversation about auto immune disease. My wife would however

agree

> that her immune system is malfunctioning. It is severely up-

regulated

> much of the time and over-reacts to most everything. It doesn't

know

> when / how to shut off. Seasonally, in the fall, it tends to

> down-regulate so that she catches every sniffle in the air. That

is

> clearly abnormal. It's merely an observation about how one of her

body

> systems (doesn't) work, though; it's not a judgment about her, or

the

> reality of her symptoms or suffering.

>

> I would take personal offense to the suggestion that I think her

> symptoms "aren't real", except that I have no idea how you could

> rationally draw such a conclusion from anything I've ever written

about

> her. Her symptoms are all too real. I think your problem is that

you

> don't see anything as real unless it's bacterially caused, and you

> therefore assume that I don't think her symptoms are real because

I

> don't believe they are 100% the result of infection. For what it's

> worth, though, we are working primarily on the infectious angle

and

I

> would credit pathogens for 90% of her symptoms even if I think the

> organisms are opportunistic because of some completely different

cause

> -- probably in my opinion environmental poisoning combined with

genetic

> vulnerability. The latter is water over the dam, of course, and

the

> pathogens are something we can actually do something about. My

greatest

> fear is that we will not be able to permanently banish them if we

can

> never find and fix the underlying cause, however.

>

> The main problem with aggressive antibiotic therapy is that her

burden

> of pathogens is so high that any significant progress in killing

them

> creates a toxic storm. Or what you would call toxemia. We have

> actually worked out a protocol with Biaxin that sort of works for

her

> and are currently pursuing it, but it's a white-knuckle balancing

act.

> Doing it wrong without consideration of all the factors involved,

only

> makes her more miserable and could well kill her. Doing it right

brings

> relief and something vaguely resembling quality of life. We are

slowly

> figuring out what's right for her.

>

> --Bob

>

> dumbaussie2000 wrote:

> >

> >

> > Bob

> > That is rediculous.. When you attempt therapy you have to

know

what

> > your going after, been there, done that, failed, is alway's

the

case

> > for people with a simple urinry tract infection. Some have

been

thru

> > these episodes on upto 18 occasions(thru there medical

history)

and

> > still haven't cleared them.

> > You've also got to have a look at what is going on in your

own

case-

> > YOUR DESCRIBING YOUR WIFE AS SOMEONE THAT'S BEING CONSTANTLY

THRASHED

> > TO WITHIN AN INCH OF HER LIFE AND YOUR SITTING HERE

COMFORTABLE

THAT

> > IT MAY BE MULTIFACTORAL- AND POSSABLY HER IMMUNE SYSTEM

ATTACKING

HER?

> > DO YOU REALISE THAT MOST PEOPLE HAVE ONE THING OCCUR THAT

TIPS

THEM

> > OVER-MONO-SURGERY -INJURY-WHIPLASH-COURSE OF ANTIBIOTICS-TICK

BITE

> > (ONE FOR PAULA) and you feel comfortable that her epsiodes of

what

> > should be best described as TOXEMIA aren't real... it's all

due

to an

> > immune system that's gone whacky.

> > Why don't you ask your wife while she's suffering if she

would

accept

> > TOXEMIA as the best explanation for her ilness- we don't need

you

to

> > tell us ask her...She may be the one that opens your eyes or

maybe

> > you should look at what comes out after a historectomy-it's

pretty

> > obvious that something needs better explaining when things

come

out

> > that have been giving long term pain and look like someone's

attacked

> > part of the anatomy with a blowtorch.

> > tony

> >

> >

> > > >> >

> > > >> >

> > > >> > This is some enormous new disease loci

study covering

> > seven

> > > >> common

> > > >> > diseases... 2-3,000 individuals in each

group. I don't

> > know

> > > >> if that

> > > >> > makes it the biggest study of it's kind

for some of

> > these

> > > >> diseases -

> > > >> > but I'm guessing so, since 50 labs worked

on this

> > cooperative.

> > > >> >

> > > >> > I'm posting it for Tony...

> > > >> >

> > > >> > "[...] Case-control comparisons identified

24

> > independent

> > > >> association

> > > >> > signals at P < 5e-7: 1 in bipolar

disorder, 1 in

> > coronary

> > > >> artery

> > > >> > disease, 9 in Crohn's disease, 3 in

rheumatoid

> > arthritis, 7

> > > >> in type

> > > >> 1

> > > >> > diabetes and 3 in type 2 diabetes. [...]

We observed

> > > >> association at

> > > >> > many previously identified loci, and found

compelling

> > > >> evidence that

> > > >> > some loci confer risk for more than one of

the diseases

> > > >> studied.

> > > >> [...]

> > > >> > The importance of appropriately large

samples was

> > confirmed

> > > >> by the

> > > >> > modest effect sizes observed at most loci

identified."

> > > >> >

> > > >> >

> > > >>

> >

http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

> > > >>

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html

> >

<http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>

>

> > > >> >

> > > >> > Haha, you'll like that last sentence,

Tony. Modest

> > effect

> > > >> sizes.

> > > >> > Sounds like no one gene makes a real big

difference in

> > any

> > > >> of these

> > > >> > diseases.

> > > >> >

> > > >> > I don't think that rules out the

possibility that some

> > of

> > > >> them could

> > > >> > be autoimmune diseases (in some stronger

or weaker

> > sense),

> > > >> as there

> > > >> > are sooo many genes that can influence

thresholds for

> > loss of

> > > >> > self-tolerance. But it does tend to make

it seem more

> > > >> likely that

> > > >> > something big is missing in the ideas most

people have

> > of

> > > >> these

> > > >> diseases.

> > > >> >

> > > >>

> > > >>

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

I think minocin for very sick people is risky. Some people do fine with it, but others like myself can't tolerate it at all. It perhaps depends on some of us having been weakened in specific ways by infection making us vulnerable to a negative response, but I think it's a bad drug to prescribe across the board without some caution...at least make people aware of the serious reactions that are known to be caused by minocin (like pseudotumor cerebri and lupus), which seem somewhat more common among pwc. I'm fine with most abx, but I felt like I was going to die on Minocin, and Imepenim wasn't much better. Bactrim made me hallucinate. Other than those, most don't affect me negatively. I either feel better, or nothing at all. But I'm afraid that some people will tolerate bad reactions to drugs like minocin, because of all the misguided talk of "herx". With drugs like minocin, that kind of thinking can

be dangerous. Minocin induced Pseudotumor Cerebri can put so much pressure on your brain that you could die or blinded. penny Bob Grommes <bob@...> wrote: She can't tolerate Zithro at all. Strangely, aside from a massive cytokine storm, the symptoms are what we associate with mobilization of mercury: dark depression and emotional lability, which in her case are particularly striking because that is so contrary to her

fundamental nature.Tried mino once, tore her stomach up right away and took months to recover. These kinds of atypical responses make abx really challenging.Biaxin brings about promising clinical results but is hard on the stomach; even so she managed a three week course which for her is a huge accomplishment. And then the doctor tried adding Ceftin.Ceftin has been tolerated fine in the past by itself, though it didn't produce clinical results one way or the other. But combined with Biaxin, Ceftin produced an immediate heavy die off of something. The toxins overwhelmed her liver, liver enzymes went through the roof, and coincidentally or not, she threw a gall stone (completely new problem -- whoopee).At this point one of her doctors is convinced the gall bladder needs to go, that it's a locus of infection and in any case should be removed while it's elective, not wait until it's a crisis. He wants to stabilize

her for a couple of months and then do the laproscopic procedure to take it out. The other doctor is more conservative and doesn't recommend attempting surgery unless she has another attack. He puts the odds of such an attack at 20%.Unless she has another attack, we are going to move heaven and earth to avoid the knife because with the severe MCS, the combination of a hospital stay and anesthesia could well run her into the ground, if not do her in altogether. For now, she is just starting the Biaxin again by itself.--Bobpjeanneus wrote: Bob,I don't know the answers but have a couple of thoughts. One is that a lot of us seem to respond to Zithromax and not Biaxin. I don't know why. It is just true. The other is an odd experience I had a couple of weeks ago. You know I have the strange 1 year

headache which is probably caused by MRSA which has gotten into my sinuses and head. Well, I used Bactroban swabs and Xylotol spray 2 weeks ago. In two days I had swollen glands, sore throat and a low grade fever. Oops.My wonderful doctor who tries to help me sort things out suggested I just use the Xylotol and see what happens. So I am starting back on that today. All of that to say I hear you when you say your wife can't tolerate massive combos and doses of various antibiotics. We've all got to hang together and keep searching for solutions. I still believe they are out there.a Carnes - back from Zion>> HI TONY. I HEAR YOU. I think you misunderstand though. We believe > toxemia is her main problem, actually. I don't believe her immune > system is attacking her and never said I did. I was just having a > conversation about auto immune disease. My wife would however

agree > that her immune system is malfunctioning. It is severely up-regulated > much of the time and over-reacts to most everything. It doesn't know > when / how to shut off. Seasonally, in the fall, it tends to > down-regulate so that she catches every sniffle in the air. That is > clearly abnormal. It's merely an observation about how one of her body > systems (doesn't) work, though; it's not a judgment about her, or the > reality of her symptoms or suffering.> > I would take personal offense to the suggestion that I think her > symptoms "aren't real", except that I have no idea how you could > rationally draw such a conclusion from anything I've ever written about > her. Her symptoms are all too real. I think your problem is that you > don't see anything as real unless it's bacterially caused, and you > therefore assume that I don't think her

symptoms are real because I > don't believe they are 100% the result of infection. For what it's > worth, though, we are working primarily on the infectious angle and I > would credit pathogens for 90% of her symptoms even if I think the > organisms are opportunistic because of some completely different cause > -- probably in my opinion environmental poisoning combined with genetic > vulnerability. The latter is water over the dam, of course, and the > pathogens are something we can actually do something about. My greatest > fear is that we will not be able to permanently banish them if we can > never find and fix the underlying cause, however.> > The main problem with aggressive antibiotic therapy is that her burden > of pathogens is so high that any significant progress in killing them > creates a toxic storm. Or what you would call toxemia. We have

> actually worked out a protocol with Biaxin that sort of works for her > and are currently pursuing it, but it's a white-knuckle balancing act. > Doing it wrong without consideration of all the factors involved, only > makes her more miserable and could well kill her. Doing it right brings > relief and something vaguely resembling quality of life. We are slowly > figuring out what's right for her.> > --Bob> > dumbaussie2000 wrote:> >> >> > Bob> > That is rediculous.. When you attempt therapy you have to know what> > your going after, been there, done that, failed, is alway's the case> > for people with a simple urinry tract infection. Some have been thru> > these episodes on upto 18 occasions(thru there medical history) and> > still haven't cleared them.> > You've also got to

have a look at what is going on in your own case-> > YOUR DESCRIBING YOUR WIFE AS SOMEONE THAT'S BEING CONSTANTLY THRASHED> > TO WITHIN AN INCH OF HER LIFE AND YOUR SITTING HERE COMFORTABLE THAT> > IT MAY BE MULTIFACTORAL- AND POSSABLY HER IMMUNE SYSTEM ATTACKING HER?> > DO YOU REALISE THAT MOST PEOPLE HAVE ONE THING OCCUR THAT TIPS THEM> > OVER-MONO-SURGERY -INJURY-WHIPLASH-COURSE OF ANTIBIOTICS-TICK BITE> > (ONE FOR PAULA) and you feel comfortable that her epsiodes of what> > should be best described as TOXEMIA aren't real... it's all due to an> > immune system that's gone whacky.> > Why don't you ask your wife while she's suffering if she would accept> > TOXEMIA as the best explanation for her ilness- we don't need you to> > tell us ask her...She may be the one that opens your eyes or maybe> > you should look

at what comes out after a historectomy-it's pretty> > obvious that something needs better explaining when things come out> > that have been giving long term pain and look like someone's attacked> > part of the anatomy with a blowtorch.> > tony> >> > > > > >> >> > > >> >> > > >> > This is some enormous new disease loci study covering> > seven> > >

>> common> > > >> > diseases... 2-3,000 individuals in each group. I don't> > know> > > >> if that> > > >> > makes it the biggest study of it's kind for some of> > these> > > >> diseases -> > > >> > but I'm guessing so, since 50 labs worked on this> > cooperative.> > > >> >> > > >> > I'm posting it for Tony...> > > >> >> > > >> > "[...] Case-control comparisons identified 24> > independent> > > >> association> > > >> > signals at P < 5e-7: 1 in bipolar disorder, 1 in> > coronary> > > >> artery> > > >> > disease, 9 in Crohn's disease, 3 in rheumatoid> > arthritis, 7> > > >> in type> > > >> 1>

> > >> > diabetes and 3 in type 2 diabetes. [...] We observed> > > >> association at> > > >> > many previously identified loci, and found compelling> > > >> evidence that> > > >> > some loci confer risk for more than one of the diseases> > > >> studied.> > > >> [...]> > > >> > The importance of appropriately large samples was> > confirmed> > > >> by the> > > >> > modest effect sizes observed at most loci identified."> > > >> >> > > >> >> > > >>> > http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html > > <http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>> > > >>> > <http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html > > <http://www.nature.com/nature/journal/v447/n7145/abs/nature05911.html>>> > > >> >> > > >> > Haha, you'll like that last sentence, Tony. Modest> > effect> > > >> sizes.> > > >> > Sounds like no one gene makes a real big difference in> > any> > > >> of these> > > >> > diseases.> > >

>> >> > > >> > I don't think that rules out the possibility that some> > of> > > >> them could> > > >> > be autoimmune diseases (in some stronger or weaker> > sense),> > > >> as there> > > >> > are sooo many genes that can influence thresholds for> > loss of> > > >> > self-tolerance. But it does tend to make it seem more> > > >> likely that> > > >> > something big is missing in the ideas most people have> > of> > > >> these> > > >> diseases.> > > >> >> > > >>> > > >>> > > >> > > >> > >> >> >>