Re: Re: spine and inflammation: Tony more questions

[Guest guest]

Practically speaking, Tony,

what do we do then? Sell our pets, and live in a bubble?

Recently studies show that children who live in less technologically

advanced cultures that are theoretically less sanitary, have fewer

allergies than children of more affluent societies. I think common

sense says that to an extent, if the study had looked at infectious

illness, it would have drawn similar conclusions, particularly if those

children were followed into adulthood. This, despite the fact we want

to believe that in "protecting" our children with antiseptic soap and

vaccinations we have provided a superior environment. Some of the

old-timers I have morning coffee with from time to time, are disdainful

of how we coddle ourselves. They grew up playing in the dirt and

toying with mercury from broken thermometers for fun and wonder what

all the fuss is about.

Indeed after living in our own personal bubble due to my wife's MCS for

several years I find myself becoming somewhat chemical adverse myself.

Nothing like her of course but I am certainly bothered by things I

would not have noticed before. I am still figuring out if this is, on

balance, good or bad for me.

I think there's probably a balance to be had here. If Sandy's immune

system is compromised then maybe she has to give up some of the things

she loves, but I wouldn't suggest that farming or horse-keeping are

universally dangerous or to be avoided, or that they should be

evaluated entirely in terms of what sort of biohazard they might be. I

would not suggest, as did one of my wife's (former) doctors, that it's

horrible to have a pet parrot, and to get rid of the filthy thing. I

mean, that damned parrot is one reason she's still alive. You need

things to live for, and you need to be needed. You can only lose so

much and still have a reason to go on.

That's why we recently had the exterior of our house painted, despite

the MCS risks and the extra precautions we had to go through.

Theoretically it was stupid. But the neighborhood association might

have had something to say about that if we let the place run down, and

besides, the inability to do interior painting, or to have company

over, and increasingly shabby clothes because we can't find safe ones

to wear, etc., just gets to a point where you have to say, "this far

and no further" or it will destroy what precious little is left of your

life.

Avoidance (of chemicals, or pathogens, or allergens, or whatever is

causing trouble) is a legitimate technique while we try to get a handle

on why our systems can't or won't throw these things off ... but it has

limits and we have to do our best to avoid a totally fortress mentality.

--Bob

dumbaussie2000 wrote:

Sandy

Your basically a carrier of OPURTUNISTIC INFECTIOUS BACTERIA which

showed up in your nasal cultures.. Your not sick until the

oppurtunity is presented to these bacteria to get a better hold. What

your not going to get the medical establishment to believe is that

bacteria can give you problems, withjout you running up an extreme

fever... unfortunately bacteria haven't been taught the rules and

they do what they want.Also the time when you would spike the fevers

no-one really explored where the problem may lie and the damage and

subsequent non fever ilness becomes a non medical

acknwlegdgement/treatment time bomb... which basically keeps

manifesting in many strange ways that no-one can ever explain to you.

The fact that you owned and brushed down horses really puts you in a

bind- especiually if they were ill. The organims you'd be exposed to

are staph epi, staph areus and pseudonomas which are dominating the

surface of many humans/animals on the planet..I'll horses may have

lead you to acquire ilness causing organisms. Even treated horses

expose you to mutated bacteria that are oppurtunistic in nature.

> > >

> > > I just wondered about this discussion.

> > > When I first got sick in 1987 the first real bad feeling

was

flu

> > > like achy and all over weakness.

> > >

> > > A few months later I could not stay awake. This was

beyond

> fatigue

> > > but just so sleepy that I could sleep for days and then

could

> > barley

> > > wake up to shower.

> > >

> > > Some time before those things felt so bad I developed

some

> painful

> > > neck and shoulder pains.

> > > I was give a couple of shots of cortizone back then and

I was

> first

> > > told it was bursitis then later tendonitis.

> > >

> > > Through the years of developing more and more symptoms

with

> these I

> > > do have daily burning neck and shoulder pain.

> > >

> > > It was not until the summer of 2000 that so many

different

pains

> > got

> > > so bad.

> > > A couple of years ago I woke up with same neck pain but

a few

> days

> > > into it the pain radiated down my arm.

> > >

> > > This got worse and the only way to get relife was to

keep my

arm

> > > over my head.

> > > This felt like a deep cramp that ran up my arm down to

my

> fingers.

> > >

> > > I went to see a chiropractor that took this seriously.

> > > He did x rays and said I had a pinched nerve he called

it

> > radiopathy.

> > > The xrays also showed spurs and degenerative disk dx.

> > > After a couple of weeks the pain got under control. I

still

have

> > > numbness in two fingers and weakness with that arm.

> > >

> > > Sometime last year my MD had me have a cervical MRI that

showed

> > > cervical spindylosis with joints of Lushka hypertrophy

at C5-6

> and

> > > C6-7.

> > > Encroachment on the neural foramina more severe on the

right

> than

> > > left.

> > > The radiopathy was on the other side.

> > > MD wanted me to see a neuro surgeon for a evaluation and

after

a

> > few

> > > more months of burning neck and shoulder pain I got up

the

nerve

> to

> > > see one more person that calls there self a Dr.

> > >

> > > The neuro surgeon ordered PT and a lumbar MRI.

> > >

> > > I have feet that are cold all the time and they feel

just like

> they

> > > are painful with a feeling that is a sorness.

> > >

> > > . I ask him the neuro surgeon back pain could cause this

and

> he

> > > ordered a lumbar MRI and PT for lumbar.

> > > It showedL3-4 diffuse posterior bulge and right lateral

disc

> > > protrusion.

> > > L4-5 diffuse posterior bulge mild facet arthropathy

bilaterally.

> > > L5-S1 diffuse posterior bulge .

> > > Both deep tendon reflexes are dead. Some of the arm ones

are

> > > dulling.

> > > These things are getting worse some days I almost can't

feel my

> > arms

> > > but they do hurt.

> > > My feet hurt every day and are so cold that I burned a

small

> hole

> > in

> > > my calf with the heating pad. I feel asleep.

> > >

> > > I tested positive for lyme dx almost three years ago.

None of

> the

> > > antibiotics seem to help except ramifin did back in the

winter.

> > > I used it for 30 days. I just started a another 30 days

of it.

> > >

> > > I had high fibrinogen, and high fragment 1+2, and then

factor

II

> > > activity was high through HEMEX.

> > >

> > > For over 20 years I have been getting a herpes rash on

my

> tailbone

> > > and now my tailbone has some hard bone that I can feel

that

> keeps

> > > growing.

> > > It didn't show up on xray.

> > > That hurts sometimes and I know that there is a knot

there

> because

> > > my husband can feel it. I can not sit in a bathtub

without it

> > > making me have to sit on one side. I don't understand

why it

> does

> > > not show up on xray. It is getting larger.

> > >

> > > Something else that I keep reading on this forum I had

two

> positive

> > > staph cultures from my nose back in 1973 and they said I

was a

> > > carrier.

> > >

> > > I don't have any root canals and only three amalgams.

> > > I have had good teeth.

> > > I did have a horse give me a concussion a few months

before all

> the

> > > flu like achy weakness started and I don't know how long

I was

> > > knocked out. The Dr I went to for lyme was the only Dr

to ever

> > > mention jarring your putitary gland.

> > >

> > > I have taken several different antibiotics so how do you

know

> which

> > > one you need?

> > >

> > > Thanks I hope I didn't ask to many questions.

> > > sandy

> > >

> >

>

[Guest guest]

You know, a couple years back I would have dismissed your spinal fluid leak as just one more of Tony's nutty theories. But after reading a lot more about intracranial hypertension and pseudotumor cerebri, I no longer think so. I think it's very possible that many of us have very tiny leakages going on, which is causing a lot of our symptoms. Or if it's not leaking, the inflammation is definitely causing swelling around the brain affecting the fluid balance. pennydumbaussie2000 <dumbaussie2000@...> wrote: BobYour missing the point! We are here to LEARN. What I suggested to Sandy was just a precaution, If your sick and not well, or are well and don't want to get sick, just keep this in mind.It's like if you work in an aboittoir you need to familiarise yourself with what is going on... good and BAD.I am here to give you what I have encountered on a platter... I have nothing to hide and love to throw in commonsense whenever it makes sense to the subject discussed.What you should have noticed in recent posts is that our spines are generally not great, I also think the attacjhemnet point to the skull and the bony surfaces of the skull (sinuses) ain't nothing to right home about.Basically as bad as the spine is the skull ain't holding that much more excitement for me..I basically thimnk we frequently leak spinal fluid from our skull or spine and have headaches

from this phenomena and we also have bacteria entering our brain cavity form the same structural breakdown... creating all sorts of havoc.If you want to follow a philosospher join the cfs experimental site and follow the puke richie dishes up about genetics and yasko and stuff. At this site all I can tell you is drop everything your doing to help your wife and get her head scanned at Dr. moser phoenix arizona and drop everything everyones told you to focus on REAL DAMAGE that LEADS TO REAL ILNESS that gives you a real goal to achieve..( VISABLE INFECTION IN A DETAILED SCAN)..The healing can only begin after this type of visual diagmnosis is made and understood?tony> > > > >> > > > > I just wondered about this discussion.> > > > > When I first got sick in 1987 the first real bad feeling was> > flu> > > > > like achy and all over weakness.> > > > >> > > > > A few months later I could not stay awake. This was beyond> > > fatigue> > > > > but just so sleepy that I could sleep for days and then could> > > > barley> > > > > wake up to shower.> > > > >> > > > > Some time before those things felt so bad I developed some> >

> painful> > > > > neck and shoulder pains.> > > > > I was give a couple of shots of cortizone back then and I was> > > first> > > > > told it was bursitis then later tendonitis.> > > > >> > > > > Through the years of developing more and more symptoms with> > > these I> > > > > do have daily burning neck and shoulder pain.> > > > >> > > > > It was not until the summer of 2000 that so many different> > pains> > > > got> > > > > so bad.> > > > > A couple of years ago I woke up with same neck pain but a few> > > days> > > > > into it the pain radiated down my arm.> > > > >> > > > > This got worse and the only way to get relife was to keep my> >

arm> > > > > over my head.> > > > > This felt like a deep cramp that ran up my arm down to my> > > fingers.> > > > >> > > > > I went to see a chiropractor that took this seriously.> > > > > He did x rays and said I had a pinched nerve he called it> > > > radiopathy.> > > > > The xrays also showed spurs and degenerative disk dx.> > > > > After a couple of weeks the pain got under control. I still> > have> > > > > numbness in two fingers and weakness with that arm.> > > > >> > > > > Sometime last year my MD had me have a cervical MRI that showed> > > > > cervical spindylosis with joints of Lushka hypertrophy at C5-6> > > and> > > > > C6-7.> > > > > Encroachment on the

neural foramina more severe on the right> > > than> > > > > left.> > > > > The radiopathy was on the other side.> > > > > MD wanted me to see a neuro surgeon for a evaluation and after> > a> > > > few> > > > > more months of burning neck and shoulder pain I got up the> > nerve> > > to> > > > > see one more person that calls there self a Dr.> > > > >> > > > > The neuro surgeon ordered PT and a lumbar MRI.> > > > >> > > > > I have feet that are cold all the time and they feel just like> > > they> > > > > are painful with a feeling that is a sorness.> > > > >> > > > > . I ask him the neuro surgeon back pain could cause this and> > > he> > > >

> ordered a lumbar MRI and PT for lumbar.> > > > > It showedL3-4 diffuse posterior bulge and right lateral disc> > > > > protrusion.> > > > > L4-5 diffuse posterior bulge mild facet arthropathy bilaterally.> > > > > L5-S1 diffuse posterior bulge .> > > > > Both deep tendon reflexes are dead. Some of the arm ones are> > > > > dulling.> > > > > These things are getting worse some days I almost can't feel my> > > > arms> > > > > but they do hurt.> > > > > My feet hurt every day and are so cold that I burned a small> > > hole> > > > in> > > > > my calf with the heating pad. I feel asleep.> > > > >> > > > > I tested positive for lyme dx almost three years ago. None of> > >

the> > > > > antibiotics seem to help except ramifin did back in the winter.> > > > > I used it for 30 days. I just started a another 30 days of it.> > > > >> > > > > I had high fibrinogen, and high fragment 1+2, and then factor> > II> > > > > activity was high through HEMEX.> > > > >> > > > > For over 20 years I have been getting a herpes rash on my> > > tailbone> > > > > and now my tailbone has some hard bone that I can feel that> > > keeps> > > > > growing.> > > > > It didn't show up on xray.> > > > > That hurts sometimes and I know that there is a knot there> > > because> > > > > my husband can feel it. I can not sit in a bathtub without it> > > > > making me

have to sit on one side. I don't understand why it> > > does> > > > > not show up on xray. It is getting larger.> > > > >> > > > > Something else that I keep reading on this forum I had two> > > positive> > > > > staph cultures from my nose back in 1973 and they said I was a> > > > > carrier.> > > > >> > > > > I don't have any root canals and only three amalgams.> > > > > I have had good teeth.> > > > > I did have a horse give me a concussion a few months before all> > > the> > > > > flu like achy weakness started and I don't know how long I was> > > > > knocked out. The Dr I went to for lyme was the only Dr to ever> > > > > mention jarring your putitary gland.> > > >

>> > > > > I have taken several different antibiotics so how do you know> > > which> > > > > one you need?> > > > >> > > > > Thanks I hope I didn't ask to many questions.> > > > > sandy> > > > >> > > >> > >> >> >>

[Guest guest]

Okay, so Rich wins points for class most definitely. :-) pennyrvankonynen <richvank@...> wrote: Hi, Tony.This suggests to me that you've been tracking what I've been writing lately. That's very flattering! I hope you'll continue to stay with me. Big things are about to come down in CFS with the genetically-based glutathione depletion--methylation cycle block hypothesis and the Amy Yasko treatment program. About 20 people I know of are trying this

now. Time will tell how well it works and on which sorts of subsets. Can't say yet what will happen where there are heavy infections. Maybe some abx will be needed as well. (How about that?) Are you familiar with Xafaxin? Two PWCs that I know of so far have reported that abx to be very helpful for gut bugs without causing problems because of detox enzyme polymorphisms, which many have. Xafaxin pretty much stays in the gut and isn't absorbed into the blood.Keep on trucking, Tony. Illigitimus non carborundum, and all that!Rich> If you want to follow a philosospher join the cfs experimental site > and follow the puke richie dishes up about genetics and yasko and > stuff. >

tony

[Guest guest]

Notice that the Cpn infection people use NAC, eh.

On Aug 21, 2006, at 10:49 PM, dumbaussie2000 wrote:

> Heh heh heh Rich.

> ...

> your one size glutathione depletion hypothesis?

[Guest guest]

On Aug 22, 2006, at 12:49 AM, dumbaussie2000 wrote:

> I really haven't read anything about the Cpn crowd

Well then, I guess it will remain a mystery why the NAC. But it's not

primarily for glutathione in this case, you'll be happy to hear.

- Kate

[Guest guest]

Tony,

It's not "all infections, all the time". I don't believe that Rich

claims glutathione fixes infections. Glutathione does what it does in

the body, and remedying a shortage of it should fix that.

The question is, whether it's all as simple as you make it out to be

(float your kidneys in abx and life is good) or as simple as Rich makes

it out to be (raise your glutathione levels because that's the key to

everything else).

The questions that would be useful to ask are: is glutathione low

because of infections? Or are infections rampant because glutathione

is low? And then of course, does it make sense to use abx when the

infections will just come back later because of glutathione depletion?

Or does it make sense to supplement glutathione when it will just drop

later because infections haven't been dealt with? Or would a

two-pronged approach be best?

All of this, of course, assumes that you are BOTH right and ALL the

other theories out there hold little or no water, which is, frankly,

assuming an awful lot.

The truth is, I fear, that we are all blind men feeling different parts

of the elephant, and not terribly willing to integrate the input from

the guy who is feeling the tail, the guy who is feeling the leg, the

guy who is feeling the trunk. And probably the guy who is feeling the

willie and doesn't want to admit it.

Put another way ... I *seriously* doubt that killing every bug you can

culture is the sole answer. Because if it were, everyone that didn't

do it would be sick and everyone that did do it would get reliably and

demonstrably better. Would that it were that simple.

I *seriously* doubt that raising glutathione is the answer (indeed, in

our experience, we *seriously* doubt there is a reliable way to raise

it because I suspect we don't truly understand why it's low or the

mechanism that makes it low). Would that it were that simple.

I *seriously* doubt that attempting to categorize a complex system like

one's enzyme detox pathways and then tweaking them nutritionally is the

total answer (would that it were even *that* simple -- and all you have

to do is listen to the abject confusion out there amongst the people

trying to follow Yasko's protocol, to see that it's pretty complicated).

I don't want to make chronic illness more complex. I don't like

complexity. In fact I hate it. However, the human body is exceedingly

complex; despite our confident assertions we only *dimly* understand it

and the state of our science, if better than a hundred years ago, is

still very crude; and if we don't approach chronic illness with some

humility we will have the situation we see here in microcosm ... a

bunch of isolated thinkers with pet theories, putting way to much

energy into turf protection and argument. Many "physicians of no

value".

It is easy to propound theories and tell people they just need to bully

their doctor into seeing the light; it is another thing entirely to do

that in the real world. I can tell you from our personal experience

that when thirty years of the best that medicine has to offer produces

nothing but feeling worse, you grow rather jaded and skeptical about

the latest theory du jour.

You see, it works like this. If I take abx a, b and c and don't get

better, or get better and relapse, you can always say I should have

taken different doses, or different abx, or on a different schedule or

protocol, or with pulsing, or that I must not have cultured / detected

everything -- whatever. If I take whey protien, lytholized glutathione

and IM glutathione shots and my glutathione levels don't go up or I

simply don't get better, you can always say that I have some bizarre

malfunction in my body that makes me the exception that proves the

rule. If Amy Yasko's baroque protocol says I need to take x, y and z

in order to tip the balance of this or that enzyme pathway, and I can't

tolerate x and y because I'm reactive to them, and z makes my digestion

go to hell, and the whole combination destabilized me further then ...

well, tough shit.

So we are reduced to cherry-picking things from here and there that (a)

sound good and ( haven't been tried in some form already, and ©

won't kill my wife outright, and the list gets smaller and smaller, and

flexibility to try things gets less and less.

I'm on this list only because I wish we had hit the multiple infection

angle sooner, but due to detox issues we may well be too late for that.

For those of you who are able to do abx, keep it up ... you're lucky.

It is probably your best shot. But don't be smug and think that you've

found the One True Path ... listen to the Riches, Amys, and even

Cheneys and take away what you can from them because those other blind

men are gathering data, too ... it's all part of the soup. Don't build

a fortress, "us vs them" mentality, however tempting it may be. Like

it or not, you need them all. Because if you manage to get better on

abx you'll need some of these other things -- nutritional support,

toxin avoidance, etc. --- to sustain your gains and keep yourself

healthy. Otherwise you would never have needed the abx in the first

place. Plenty of people have what they consider an acceptable or even

excellent quality of life without them, after all.

--Bob

dumbaussie2000 wrote:

Kate

So we fix infections by using glutathione? What if the glutathione is

fueling INFLAMMATION, what do we do then? I think the vitamin

supplementing crowd may get excited because everything there doing

sounds all good, but the facts are the vitamin poppers reduce there

life expectancy.... excited are we to fuel our problems..

I really haven't read anything about the Cpn crowd, I do recall five

years earlier trying to explain at a cfs forum how there disease and

the lyme forums description of there disease was identical. This made

me start reading lyme forums, my only learning curve with them is the

waxing and wanning of the therapies, that gave me a stronger

curiousity to learn first hand what there actual infections looked

like.I actually did the same after reading heavily at the candida

forums- they are the same as the rest of us.

> > Heh heh heh Rich.

> > ...

> > your one size glutathione depletion hypothesis?

>

[Guest guest]

Bob, very well said. If we had an acutal website, it should be a permanent page. I just wish more people would give more credence to the seriousness of infection and inflammation and spend AS much time trying to figure out how to make antimicrobials and anti-inflammatories work as they try to figure out how to make supplements work. Then I'd feel like we've got a shot. Right now, with the exception of lyme, attention is always somehow being deflected away from microbes. If I were overly paranoid, I'd think it was some master plot to keep us all sick. penny Bob Grommes <bob@...> wrote: Tony,It's not "all infections, all the time". I don't believe that Rich claims glutathione fixes infections. Glutathione does what it does in the body, and remedying a shortage of it should fix that.The question is, whether it's all as simple as you make it out to be (float your kidneys in abx and life is good) or as simple as Rich makes it out to be (raise your glutathione levels because that's the key to everything else).The questions that would be useful to ask are: is glutathione low because of infections? Or are infections rampant because glutathione is low? And then of course, does it make sense to use abx when the infections will just come back later because of

glutathione depletion? Or does it make sense to supplement glutathione when it will just drop later because infections haven't been dealt with? Or would a two-pronged approach be best?All of this, of course, assumes that you are BOTH right and ALL the other theories out there hold little or no water, which is, frankly, assuming an awful lot.The truth is, I fear, that we are all blind men feeling different parts of the elephant, and not terribly willing to integrate the input from the guy who is feeling the tail, the guy who is feeling the leg, the guy who is feeling the trunk. And probably the guy who is feeling the willie and doesn't want to admit it.Put another way ... I *seriously* doubt that killing every bug you can culture is the sole answer. Because if it were, everyone that didn't do it would be sick and everyone that did do it would get reliably and demonstrably better. Would that it were that simple.I

*seriously* doubt that raising glutathione is the answer (indeed, in our experience, we *seriously* doubt there is a reliable way to raise it because I suspect we don't truly understand why it's low or the mechanism that makes it low). Would that it were that simple.I *seriously* doubt that attempting to categorize a complex system like one's enzyme detox pathways and then tweaking them nutritionally is the total answer (would that it were even *that* simple -- and all you have to do is listen to the abject confusion out there amongst the people trying to follow Yasko's protocol, to see that it's pretty complicated).I don't want to make chronic illness more complex. I don't like complexity. In fact I hate it. However, the human body is exceedingly complex; despite our confident assertions we only *dimly* understand it and the state of our science, if better than a hundred years ago, is still very crude; and if we don't approach

chronic illness with some humility we will have the situation we see here in microcosm ... a bunch of isolated thinkers with pet theories, putting way to much energy into turf protection and argument. Many "physicians of no value".It is easy to propound theories and tell people they just need to bully their doctor into seeing the light; it is another thing entirely to do that in the real world. I can tell you from our personal experience that when thirty years of the best that medicine has to offer produces nothing but feeling worse, you grow rather jaded and skeptical about the latest theory du jour.You see, it works like this. If I take abx a, b and c and don't get better, or get better and relapse, you can always say I should have taken different doses, or different abx, or on a different schedule or protocol, or with pulsing, or that I must not have cultured / detected everything -- whatever. If I take whey protien,

lytholized glutathione and IM glutathione shots and my glutathione levels don't go up or I simply don't get better, you can always say that I have some bizarre malfunction in my body that makes me the exception that proves the rule. If Amy Yasko's baroque protocol says I need to take x, y and z in order to tip the balance of this or that enzyme pathway, and I can't tolerate x and y because I'm reactive to them, and z makes my digestion go to hell, and the whole combination destabilized me further then ... well, tough shit.So we are reduced to cherry-picking things from here and there that (a) sound good and ( haven't been tried in some form already, and © won't kill my wife outright, and the list gets smaller and smaller, and flexibility to try things gets less and less.I'm on this list only because I wish we had hit the multiple infection angle sooner, but due to detox issues we may well be too late for that.For those of you who are able

to do abx, keep it up ... you're lucky. It is probably your best shot. But don't be smug and think that you've found the One True Path ... listen to the Riches, Amys, and even Cheneys and take away what you can from them because those other blind men are gathering data, too ... it's all part of the soup. Don't build a fortress, "us vs them" mentality, however tempting it may be. Like it or not, you need them all. Because if you manage to get better on abx you'll need some of these other things -- nutritional support, toxin avoidance, etc. --- to sustain your gains and keep yourself healthy. Otherwise you would never have needed the abx in the first place. Plenty of people have what they consider an acceptable or even excellent quality of life without them, after all.--Bobdumbaussie2000 wrote: KateSo we fix infections by using glutathione? What if the glutathione is fueling INFLAMMATION, what do we do then? I think the vitamin supplementing crowd may get excited because everything there doing sounds all good, but the facts are the vitamin poppers reduce there life expectancy.... excited are we to fuel our problems..I really haven't read anything about the Cpn crowd, I do recall five years earlier trying to explain at a cfs forum how there disease and the lyme forums description of there disease was identical. This made me start reading lyme forums, my only learning curve with them is the waxing and wanning of the therapies, that gave me a stronger curiousity to learn first hand what there actual infections looked like.I actually did the same after reading heavily at the candida forums- they are the same as the rest of us.> > Heh heh heh Rich.> > ...> > your one size glutathione depletion hypothesis?>

[Guest guest]

It's spelled Xifaxin.

Someone with a confirmed brain infection would not want it. Someone

with a confirmed gut infection would.

--Bob

pjeanneus wrote:

Rich,

I did a google search for Xafaxin and absolutely nothing turns up.

Could it be spelled differently? In any case, is it related to

nystatin which also only works in the gut? I have to ask why someone

with an intracellular infection that is in the brain would want an

antibiotic that only works in the gut.

I am interested in gene studies but I have many reservations

regarding Yasko's treatments, let alone how significant gene studies

are at this time for the average patient. I do agree that eventually,

assuming we don't destroy the earth with a nuclear war, that gene

studies will serve to customize treatment to suit the patient.

Currently millions of people are genetically vulnerable to the

infections underlying our diseases just as billions are vulnerable to

HIV. (I just read a fascinating study on why some people can reverse

HIV due to their genetic makeup. Such studies may turn into

treatments.)

But back to Yasko's treatments - even assuming they are the correct

ones for a given patient - we have seen that HIV patients die because

they simply can't keep up with the treatment protocol. Many more HIV

patients have survived because the treatments have been simplified to

what - a couple of pills a day? I'm pretty good about taking several

pills a day for Lyme, but there is no way I could follow the

complexities of Yasko's treatments I have seen for even one patient.

(On an aside, I have worked with quite a few autistic teens - you

have a hard time getting them to put a shoe on let alone taking pills

and eating only certain foods - so I find her treatments mindboggling

in several ways. Oh, and they like to steal food out of the fridg and

off other people's plates.)

On a personal note, as you know, I have been gossiped about behind my

back with statements such as I am mentally ill, I am a negative

person who likes to argue over anything that is not my point of view

etc. I am none of the above, but I am vulnerable. I have been harmed

by these email lists and it was not Tony who did the harm. I can deal

with Tony's honest disagreement and confrontation. But I am just

about at the point personally of leaving these lists which I think

tend to make us sicker. In my case they certainly make me feel like

just accepting the level of recovery I have and living the rest of my

life in reasonable stablity although not entirely well. When I read

what has been written about me by total strangers who don't know me,

I feel like giving up.

I guess I have gotten to the place where I completely understand why

and Dudley disappeared.

a Carnes

>

> Hi, Tony.

>

> This suggests to me that you've been tracking what I've been

writing

> lately. That's very flattering! I hope you'll continue to stay

with

> me. Big things are about to come down in CFS with the genetically-

> based glutathione depletion--methylation cycle block

hypothesis and

> the Amy Yasko treatment program. About 20 people I know of are

trying

> this now. Time will tell how well it works and on which sorts of

> subsets. Can't say yet what will happen where there are heavy

> infections. Maybe some abx will be needed as well. (How about

that?)

> Are you familiar with Xafaxin? Two PWCs that I know of so far have

> reported that abx to be very helpful for gut bugs without causing

> problems because of detox enzyme polymorphisms, which many have.

> Xafaxin pretty much stays in the gut and isn't absorbed into the

blood.

>

> Keep on trucking, Tony. Illigitimus non carborundum, and all that!

>

> Rich

[Guest guest]

Dear Bob, You have verbalized, in great eloquence, the mysteries of the the quandary of the elephant...of our diseases!!! Thanks for putting it into perspective. Amelia pjeanneus <pj7@...> wrote: Bob,You have stated the complexity of our situation better than I have ever read. I am printing a copy to read

again.Hum,if some of us could just find the elephant's willy life would improve greatly.a Carnes>> Tony,> > It's not "all infections, all the time". I don't believe that Rich > claims glutathione fixes infections. Glutathione does what it does in > the body, and remedying a shortage of it should fix that.> > The question is, whether it's all as simple as you make it out to be > (float your kidneys in abx and life is good) or as simple as Rich makes > it out to be (raise your glutathione levels because that's the key to > everything else).> > The questions that would be useful to ask are: is glutathione low > because of infections? Or are infections rampant because glutathione is > low? And then of course, does it make sense to use abx when the > infections will just come back later because of glutathione

depletion? > Or does it make sense to supplement glutathione when it will just drop > later because infections haven't been dealt with? Or would a > two-pronged approach be best?> > All of this, of course, assumes that you are BOTH right and ALL the > other theories out there hold little or no water, which is, frankly, > assuming an awful lot.> > The truth is, I fear, that we are all blind men feeling different parts > of the elephant, and not terribly willing to integrate the input from > the guy who is feeling the tail, the guy who is feeling the leg, the guy > who is feeling the trunk. And probably the guy who is feeling the > willie and doesn't want to admit it.> > Put another way ... I *seriously* doubt that killing every bug you can > culture is the sole answer. Because if it were, everyone that didn't do > it would be

sick and everyone that did do it would get reliably and > demonstrably better. Would that it were that simple.> > I *seriously* doubt that raising glutathione is the answer (indeed, in > our experience, we *seriously* doubt there is a reliable way to raise it > because I suspect we don't truly understand why it's low or the > mechanism that makes it low). Would that it were that simple.> > I *seriously* doubt that attempting to categorize a complex system like > one's enzyme detox pathways and then tweaking them nutritionally is the > total answer (would that it were even *that* simple -- and all you have > to do is listen to the abject confusion out there amongst the people > trying to follow Yasko's protocol, to see that it's pretty complicated).> > I don't want to make chronic illness more complex. I don't like > complexity. In fact I

hate it. However, the human body is exceedingly > complex; despite our confident assertions we only *dimly* understand it > and the state of our science, if better than a hundred years ago, is > still very crude; and if we don't approach chronic illness with some > humility we will have the situation we see here in microcosm ... a bunch > of isolated thinkers with pet theories, putting way to much energy into > turf protection and argument. Many "physicians of no value".> > It is easy to propound theories and tell people they just need to bully > their doctor into seeing the light; it is another thing entirely to do > that in the real world. I can tell you from our personal experience > that when thirty years of the best that medicine has to offer produces > nothing but feeling worse, you grow rather jaded and skeptical about the > latest

/theory du jour/.> > You see, it works like this. If I take abx a, b and c and don't get > better, or get better and relapse, you can always say I should have > taken different doses, or different abx, or on a different schedule or > protocol, or with pulsing, or that I must not have cultured / detected > everything -- whatever. If I take whey protien, lytholized glutathione > and IM glutathione shots and my glutathione levels don't go up or I > simply don't get better, you can always say that I have some bizarre > malfunction in my body that makes me the exception that proves the > rule. If Amy Yasko's baroque protocol says I need to take x, y and z in > order to tip the balance of this or that enzyme pathway, and I can't > tolerate x and y because I'm reactive to them, and z makes my digestion > go to hell, and the whole combination destabilized me

further then ... > well, tough shit.> > So we are reduced to cherry-picking things from here and there that (a) > sound good and ( haven't been tried in some form already, and © > won't kill my wife outright, and the list gets smaller and smaller, and > flexibility to try things gets less and less.> > I'm on this list only because I wish we had hit the multiple infection > angle sooner, but due to detox issues we may well be too late for that.> > For those of you who are able to do abx, keep it up ... you're lucky. > It is probably your best shot. But don't be smug and think that you've > found the One True Path ... listen to the Riches, Amys, and even Cheneys > and take away what you can from them because those other blind men are > gathering data, too ... it's all part of the soup. Don't build a > fortress, "us vs them"

mentality, however tempting it may be. Like it > or not, you need them all. Because if you manage to get better on abx > you'll need some of these other things -- nutritional support, toxin > avoidance, etc. --- to sustain your gains and keep yourself healthy. > Otherwise you would never have needed the abx in the first place. > Plenty of people have what they consider an acceptable or even excellent > quality of life without them, after all.> > --Bob>

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Tony,

I didn't really expect you to trouble yourself reading most of what I

wrote. In that sense, it wasn't really written primarily for your

benefit.

As to your "explanation", like much of what you write it is disjointed

and I can't make head nor tails of it.

As near as I can tell, you labor under the misconception that science

is about getting it "right" when in fact, it's about becoming

progressively less wrong over time. This may seem like a subtle point

but it's extremely important because realizing that the universe is

vast and our minds small, informs our humility and allows us to make

what progress we can. No one has yet achieved the level of omniscience

that would be required to get it "right". Like I said, our science is

better than it was, but still very crude.

You are not the first person in history (nor, alas, will you be the

last) who hunts for some simple "key" and thinks they've found it and

fully comprehended everything there is to know about it. Despite this,

I do believe that chronic multiple infections are an oft-overlooked

issue, and abx are an oft-maligned tool in dealing with those

infections. I just don't think that fixing that one problem in that

one area is going to wipe chronic illness from the face of the earth.

Nor do I believe that taking up that one tool as if it exists in a

vacuum will advance my wife's health. All actions have side effects,

especially in a house of cards.

Best,

--Bob

dumbaussie2000 wrote:

Bob

I didn't read most of what you wrote but will explain it to you like

this. Things ain't as complex as is being made out. Firstly in an

autopsy the cause of death is traceable.They open you up, look at

your heart, weigh it, and see that it's enlarged -BANG!

CARDIOMYO0PATHY

the heart was inflammed and it ended up 33% larger than what is

expected. The other thing they observe- 'the brain' for egs. The

brain comes out smaller.. dementia.. patient cause of death? possable

loss of neurological control.. I can keep going, vascular disease,

kidney disease, liver, fibrous formations in many area's

(fibromyalgia).. Basically the cause of death can be traced and

can

be called genetically defective... because all this fibrous tissue

your heart is growing ain't tissue you'd grow normally, so we can

actually classify it as genetic. But!!!! now this is important- THE

CORONER IS GOING TO CALL ALL THIS MESS INFLAMMATION DAMAGE.. This

falls into the realms of the inflammation driven trillion dollar

pharmaceutical industry. Mr. Rich V klonkenberger ain't going to end

up at the head of the table at some international pharmaceutical

company speaking at a metting in europe somehwhere- how glutathione

depletion therapy is going to save anyones ass because he doesn't

realise the mess that's created to the sufferers is caused by

inflammation.

more later

> > > > Heh heh heh Rich.

> > > > ...

> > > > your one size glutathione depletion hypothesis?

> > >

> >

> >

>

[Guest guest]

a,

Gut disbiosis is a separate issue from brain infection. I agree that

borellia has a strong affinity for the CNS, but there are various

infections, particularly of the small intestine, that can cause no end

of problems -- shortages of neurotransmitters, for instance, many of

which are made in the gut; shortages of magnesium; shortages and

imbalances of amino acids; inability to properly absorb nutrients;

impaired bowel motility (and by extension, retention of toxins too long

in the gut, that should be expeditiously excreted, lest they be

re-absorbed).

All of these things impact the CNS too, some of them very directly. My

wife has found Xifaxin helpful precisely because (a) she has all of the

above symptoms; ( has various gut problems and infections and © can

tolerate Xifaxin because it stays in the gut and does not need to be

detoxed by her liver -- and any die-off induced toxins will hopefully

tend to stay out of general circulation. It may not be her main

problem, but it is a significant one, and one of the few ones we've

been able to effectively address in her particular situation.

And by the way, we give full credit to Rich V for coming up with this

idea. Since Rich would never toot his own horn, I would like to point

out that the man retired early to pursue his interest in CFIDS research

and spends a lot of pro bono time thinking deeply about

particular cases with his considerable intellect. I do not necessarily

agree 110% with all of his theories and conclusions but am very glad to

have him in our corner. He is a genuinely good man, and doing

everything he can to help, and I believe he should be welcomed as an

ally.

You are correct that Yasko's protocol (like all protocols) must be

approached carefully and tailored to the particular patient you wish to

apply it to. And that in her enthusiasm for her own ideas she may not

think through all the ramifications of what she suggests. Although in

fairness to her, I suppose that she expects that people will consult

their doctors on those fine points (and no doubt has the charming

naivete that patients can trust their doctors entirely to sort it all

out). This is a frequent blind spot of researchers ... those damned

patients just don't always behave by responding as expected to all

their theories. As my wife's MD likes to say -- "well, your body just

hasn't read the textbooks".

--Bob

pjeanneus wrote:

>

> It's spelled Xifaxin.

>

> Someone with a confirmed brain infection would not want it.

Someone

> with a confirmed gut infection would.

>

> --Bob

Thanks, Bob. I will look it up. But I must say, and I totally respect

Rich and consider him a great friend for several years now, that at

least two doctors are finding cfs patients are 90 to 95% infected with

borrelia which is a brain infection - why would an antibiotic that

only clears gut bacteria be useful? (Besides cfs is notorious for

causing brain fog and brain dysfunction - possibly a clue to brain

infection. I do know that some have found mycoplasma infection in bone

marrow and spinal fluid.)

Also, Yasko has on her Lyme list one herb that acts as an antibiotic,

samento. Now samento does seem to help some Lyme patients, but I

wonder does Yasko give them fair warning to watch for CNS problems and

tendon problems that will get much worse and look just like Lyme and

get confused with a herx when they are taking samento? (Please excuse

me for repeating this, but I feel that people are overlooking these

things when it comes to Yasko as if she is recommending safe and

harmless treatments because they are herbs or dietary changes.)

You were absolutely correct when you wrote that the human body is

complex beyond what we can even imagine. "We are fearfully and

wonderfullly made."

a

[Guest guest]

a wrote:For instance (forgive me if I wrote this) samento is an extremely dangerous herb for anyone who cannot tolerate quinolone antibiotics. a, I almost hate to even bring this up, for fear of the firestorm of attacks this discussion has brought in the past, but do you have any actual documentation to prove that Samento has the same quinilones in it that cause the tendon damage in the flouroquinolone antibiotics? The Samento advocates say that it's not the same because it doesn't contain the "flouro" aspect, which they believe, in combination with the quinilone, is the true cause of the damage. I have never once been able to find any proof of thir claim, but then, I've never even been able to find proof that Samento really is a natural quinilone. I even tried to write the Samento Doc's reps, and just got

the same old sales pitch propogand. I didn't get one bit of compelling or convincing information to answer my question. I suppose there's not enough research on Samento yet. But the end result is a bunch of claims that are impossible to sort truth from fiction. Anyway, IF you can find me some kind of documentation of the actual link between whatever kind of quinilone is in Samento (IF it's really there), and tendon damage, I will place it in our files section for people who may unwittingly take Samento under the assumption that it's a safe herb. And by the way, is Dr. Andy still big on Samento? I don't seem to be hearing nearly so much about it lately. Has it gone to that "another one bites the dust" treatment cemetery in the sky? :-)