Re: Tony: Thrush / pseudomonas...

[Guest guest]

Dan

Unfortunately I would alway's say to people a few years back- DON " T

TELL ME YOU " VE GOT THRUSH, SEND ME A SWAB and just about 100% grew

pseudonomas.Now to me that is very important information, because

everyone in the cfs community is stuck in the belief they have thrush

due to a fungal infection, when it will prove to be a bacterial

pseudonomas infection nearly 100% of the time.

This also reminds me of an aunt who had a fungal infection of the

face that kept her irritated and pissed off for years until she

pestered her doctor to refer her along to someone that diagnosed and

treated the actual irritation instaed of throwing everything in his

draw at it. The science won the day. a simple swab and correct

treatment was hard to beat.

> >

> Pseudonomas is almost always mistaken

> > for thrush in the CFS community.

> > tony

> >

>

> Tony -- do you have a link or some other reference I can shove in

the face of my previous

> (my medicaid) doctor -- showing the link between thrush and

pseudomonas?

>

> I've had thrush for 15-20 years...and seen probably 10 doctors in

that time. Sick w/ CFS

> since 1998....

>

> Thanks

>

> Dan

>

[Guest guest]

I'll see if my new doc knows of a lab that would do the swab test. I know my

medicaid doc

would probably deny it, unless there were four double-blind studies that would

back it up.

One day I'm going to visit her and tell her of all the things she missed...and

without

sounding like a professional victim, tell her about all the years I lost due to

mis or

undiagnosed issues.

thanks,

d.

> > >

> > Pseudonomas is almost always mistaken

> > > for thrush in the CFS community.

> > > tony

> > >

> >

> > Tony -- do you have a link or some other reference I can shove in

> the face of my previous

> > (my medicaid) doctor -- showing the link between thrush and

> pseudomonas?

> >

> > I've had thrush for 15-20 years...and seen probably 10 doctors in

> that time. Sick w/ CFS

> > since 1998....

> >

> > Thanks

> >

> > Dan

> >

>

[Guest guest]

Dan

I'm all for you getting to the bottom of things with your doctor- BUT

come up with a strategy that you know she might bye.Instead of saying

from day one I had a thrush problem when my disease began to now

finding it's been a pseudomonal infection that's kept me hampoered

for all these years.You got to go in and say I'm frustrated I've

tried several things and unles we use a bit of science to determine

the best treatment I'm never going to get to the bottom of This

irritation - I feel.

You have to know your doctor and what she'll tolerate if she's a

spastuic it's time to move on- I wonb't tolerate too many spastic

doctors in my neck of the woods...Although I must admit I tended to

go for the female doctors that didn't worry too much about looking

glamorous and would actually put the thinking cap on while you where

there.

tony

> > > >

> > > Pseudonomas is almost always mistaken

> > > > for thrush in the CFS community.

> > > > tony

> > > >

> > >

> > > Tony -- do you have a link or some other reference I can shove

in

> > the face of my previous

> > > (my medicaid) doctor -- showing the link between thrush and

> > pseudomonas?

> > >

> > > I've had thrush for 15-20 years...and seen probably 10 doctors

in

> > that time. Sick w/ CFS

> > > since 1998....

> > >

> > > Thanks

> > >

> > > Dan

> > >

> >

>

[Guest guest]

HMOs are a big problem here. You don't have a lot of choice when it comes to doctors. And now, many regular docs aren't accepting medicare/aid either, so it's not so easy for a lot of Americans to switch docs. You should watch Sicko, Tony. I think you'd get a better idea of how our system works (or so I'm told). penny dumbaussie2000 <dumbaussie2000@...> wrote: DanI'm all for you getting to the bottom of things with your doctor- BUT

come up with a strategy that you know she might bye.Instead of saying from day one I had a thrush problem when my disease began to now finding it's been a pseudomonal infection that's kept me hampoered for all these years.You got to go in and say I'm frustrated I've tried several things and unles we use a bit of science to determine the best treatment I'm never going to get to the bottom of This irritation - I feel.You have to know your doctor and what she'll tolerate if she's a spastuic it's time to move on- I wonb't tolerate too many spastic doctors in my neck of the woods...Although I must admit I tended to go for the female doctors that didn't worry too much about looking glamorous and would actually put the thinking cap on while you where there.tony> > > >> > > Pseudonomas is almost always mistaken > > > > for thrush in the CFS community.> > > > tony> > > > > > > > > > Tony -- do you have a link or some other reference I can shove in > > the face of my previous > > > (my medicaid) doctor -- showing the link between thrush and > > pseudomonas?> > > > > > I've had thrush for 15-20 years...and seen probably 10 doctors in > > that time. Sick w/ CFS > > > since 1998....> > > > > > Thanks> > > > > > Dan> > >>

>>

[Guest guest]

You can't determine what is causing thrush or any other pale oral

excrescence/lesion by inoculating it onto a plate. The mouth is a

septic area, so full of microbes that its tissues are constantly being

infiltrated by neutrophils every day. Any swab you put into the mouth

is going to pick up hundreds of microbial taxa, if not more.

Pseudomonas is a generalist genus found all over the earth and sea.

> Dan

> Unfortunately I would alway's say to people a few years back- DON " T

> TELL ME YOU " VE GOT THRUSH, SEND ME A SWAB and just about 100% grew

> pseudonomas.Now to me that is very important information, because

> everyone in the cfs community is stuck in the belief they have thrush

> due to a fungal infection, when it will prove to be a bacterial

> pseudonomas infection nearly 100% of the time.

> This also reminds me of an aunt who had a fungal infection of the

> face that kept her irritated and pissed off for years until she

> pestered her doctor to refer her along to someone that diagnosed and

> treated the actual irritation instaed of throwing everything in his

> draw at it. The science won the day. a simple swab and correct

> treatment was hard to beat.

[Guest guest]

So eric- are you saying it's not worth INVESTIGATING??Regardless

what anyone teaches you, INFORMATION is better than guessing IMO.

tony

>

>

> You can't determine what is causing thrush or any other pale oral

> excrescence/lesion by inoculating it onto a plate. The mouth is a

> septic area, so full of microbes that its tissues are constantly

being

> infiltrated by neutrophils every day. Any swab you put into the

mouth

> is going to pick up hundreds of microbial taxa, if not more.

> Pseudomonas is a generalist genus found all over the earth and sea.

>

>

> > Dan

> > Unfortunately I would alway's say to people a few years back-

DON " T

> > TELL ME YOU " VE GOT THRUSH, SEND ME A SWAB and just about 100%

grew

> > pseudonomas.Now to me that is very important information, because

> > everyone in the cfs community is stuck in the belief they have

thrush

> > due to a fungal infection, when it will prove to be a bacterial

> > pseudonomas infection nearly 100% of the time.

> > This also reminds me of an aunt who had a fungal infection of the

> > face that kept her irritated and pissed off for years until she

> > pestered her doctor to refer her along to someone that diagnosed

and

> > treated the actual irritation instaed of throwing everything in

his

> > draw at it. The science won the day. a simple swab and correct

> > treatment was hard to beat.

>

[Guest guest]

Well I guess I don't really know as much about it as I implied. I

certainly wouldn't rely on it for 100% good information, but maybe if

an organism causing the lesion were very abundant, that would at least

increase the chances that that organism dominates on the plate.

How do they recover S. pyogenes, as opposed to everything else that's

there, when they swab the mucosal surface for strep throat? Is it just

that the pyogenes are so abundant in the strep throat situation, that

at least 10% or something of the colonies they recover on normal

medium are S pyogenes?

>

> So eric- are you saying it's not worth INVESTIGATING??Regardless

> what anyone teaches you, INFORMATION is better than guessing IMO.

> tony

>

[Guest guest]

Here's a provisional answer: " Streptococcus pyogenes on Blood Agar:

Note the ? hemolysis characteristic of this species. A throat culture

yielding a large number of small, ?-hemolytic colonies may indicate

strep throat. "

So apparantly it always(?) grows hemolytically on blood agar.

(The " ? " must be an " alpha " or " beta " that came out wrong.)

Is there any other mircobe that is often cultured from septic sites

like the mouth/throat?

> Well I guess I don't really know as much about it as I implied. I

> certainly wouldn't rely on it for 100% good information, but maybe if

> an organism causing the lesion were very abundant, that would at least

> increase the chances that that organism dominates on the plate.

>

> How do they recover S. pyogenes, as opposed to everything else that's

> there, when they swab the mucosal surface for strep throat? Is it just

> that the pyogenes are so abundant in the strep throat situation, that

> at least 10% or something of the colonies they recover on normal

> medium are S pyogenes?

>

[Guest guest]

The dynamics change..In the throat of someone suffering strep throat

most other species cannot live alongside strep pyogenes. So you end

up with a swab containing a couple of species. With normal folk

you'll get a garden variety mix of many organisms- with pseudonomas

it's also king of the hill alongside bad staph epi's and staph

areus.Remember antibiotics are made from bacterial toxins, the ones

expressed in nature to make a territory yourown in the bacterial

world.

tony

> >

> > So eric- are you saying it's not worth INVESTIGATING??Regardless

> > what anyone teaches you, INFORMATION is better than guessing IMO.

> > tony

> >

>

[Guest guest]

They culture throats for strep throat only,in the labs of the

world..Other orgnisms regardless of what and how harmfull don't come

on the menu- medicine is like 40 years behind reality.

So if you have a fullminating throat you fail the strep test and are

told OH!! it's viral(wank wank)

>

>

> Here's a provisional answer: " Streptococcus pyogenes on Blood Agar:

> Note the ? hemolysis characteristic of this species. A throat

culture

> yielding a large number of small, ?-hemolytic colonies may indicate

> strep throat. "

>

> So apparantly it always(?) grows hemolytically on blood agar.

>

> (The " ? " must be an " alpha " or " beta " that came out wrong.)

>

> Is there any other mircobe that is often cultured from septic sites

> like the mouth/throat?

>

>

>

> > Well I guess I don't really know as much about it as I implied. I

> > certainly wouldn't rely on it for 100% good information, but

maybe if

> > an organism causing the lesion were very abundant, that would at

least

> > increase the chances that that organism dominates on the plate.

> >

> > How do they recover S. pyogenes, as opposed to everything else

that's

> > there, when they swab the mucosal surface for strep throat? Is it

just

> > that the pyogenes are so abundant in the strep throat situation,

that

> > at least 10% or something of the colonies they recover on normal

> > medium are S pyogenes?

> >

>

[Guest guest]

Yes, I'd like to confirm this.

It happened to me last year: RAGING sore throat, throat very very inflamed, all swollen up, could not swallow, could hardly breathe, WHITE SPOTS AND PATCHES. went to cretin doc who did his Mickey Mouse strep test in his office and proudly declared me strep-free. "Nope, it's not bacterial, it's viral, go away and it will also go away". I was furious and let him know, but he was so cock-sure of himself there was no way he was going to rx abx. He also refused to send a swab to be tested further, and to have abx tested against whatever grew. I went to the lab myself and insisted they did it nevertheless (in France they think you're a nutcase to want something medical yourself, "you've got to trust your doctor".

Cut a long story short: yes I did have strep, no it was not sensitive to amoxi/augmentin (which I took because that's what I had in my cupboard, and the testing took nearly a week to be completed). I finally beat it with pyostacine (not used much outside of France).

I could not get a report on other things they grew in my swab, and I have not been back to the idiot doc (contrarily to what Tony thinks, it's because I didn't want to become violent with the doc and end up in jail, not out of being a sheepish female-I wish to protect them against me, and me against the law!)

Nelly

[infections] Re: Tony: Thrush / pseudomonas...

They culture throats for strep throat only,in the labs of the world..Other orgnisms regardless of what and how harmfull don't come on the menu- medicine is like 40 years behind reality.So if you have a fullminating throat you fail the strep test and are told OH!! it's viral(wank wank)>> > Here's a provisional answer: "Streptococcus pyogenes on Blood Agar:> Note the ? hemolysis characteristic of this species. A throat culture> yielding a large number of small, ?-hemolytic colonies may indicate> strep throat."> > So apparantly it always(?) grows hemolytically on blood agar.> > (The "?" must be an "alpha" or "beta" that came out wrong.)> > Is there any other mircobe that is often cultured from septic sites> like the mouth/throat?> > > > > Well I guess I don't really know as much about it as I implied. I> > certainly wouldn't rely on it for 100% good information, but maybe if> > an organism causing the lesion were very abundant, that would at least> > increase the chances that that organism dominates on the plate.> > > > How do they recover S. pyogenes, as opposed to everything else that's> > there, when they swab the mucosal surface for strep throat? Is it just> > that the pyogenes are so abundant in the strep throat situation, that> > at least 10% or something of the colonies they recover on normal> > medium are S pyogenes?> >>

[Guest guest]

It's a good point. Why do they test for strep and nothing else when strep is just as "common" as any other flora we carry? Why do they acknowledge that strep can be either benign or make you sick, but not staph? Nelly, it's truly maddening. I wish there were something we could do to turn the tables on these docs. We need to create some kind of publicity stunt, a movement, to show what arses these guys are being. Unfortunately, we can't get enough people to even recognize there's a problem let alone get them involved in a group effort to change it. penny Nelly Pointis <janel@...> wrote: Yes, I'd like to confirm this. It happened to me last year: RAGING sore throat, throat very very inflamed, all swollen up, could not swallow, could hardly breathe, WHITE SPOTS AND PATCHES. went to cretin doc who did his Mickey Mouse strep test in his office and proudly declared me strep-free. "Nope, it's not bacterial, it's viral, go away and it will also go away". I was furious and let him know, but he was so cock-sure of himself there was no way he was going to rx abx. He also refused to send a swab to be tested further, and to have abx tested against whatever grew. I went to the lab myself and insisted they

did it nevertheless (in France they think you're a nutcase to want something medical yourself, "you've got to trust your doctor". Cut a long story short: yes I did have strep, no it was not sensitive to amoxi/augmentin (which I took because that's what I had in my cupboard, and the testing took nearly a week to be completed). I finally beat it with pyostacine (not used much outside of France). I could not get a report on other things they grew in my swab, and I have not been back to the idiot doc (contrarily to what Tony thinks, it's because I didn't want to become violent with the doc and end up in jail, not out of being a sheepish female-I wish to protect them against me, and me against the law!) Nelly [infections] Re: Tony: Thrush / pseudomonas... They culture throats for strep throat only,in the labs of the world..Other orgnisms regardless of what and how harmfull don't come on the menu-

medicine is like 40 years behind reality.So if you have a fullminating throat you fail the strep test and are told OH!! it's viral(wank wank)>> > Here's a provisional answer: "Streptococcus pyogenes on Blood Agar:> Note the ? hemolysis characteristic of this species. A throat culture> yielding a large number of small, ?-hemolytic colonies may indicate> strep throat."> > So apparantly it always(?) grows hemolytically on blood agar.> > (The "?" must be an "alpha" or "beta" that came out wrong.)> > Is there any other mircobe that is often cultured from septic sites> like the mouth/throat?> > > > > Well I guess I don't really know as much about it as I

implied. I> > certainly wouldn't rely on it for 100% good information, but maybe if> > an organism causing the lesion were very abundant, that would at least> > increase the chances that that organism dominates on the plate.> > > > How do they recover S. pyogenes, as opposed to everything else that's> > there, when they swab the mucosal surface for strep throat? Is it just> > that the pyogenes are so abundant in the strep throat situation, that> > at least 10% or something of the colonies they recover on normal> > medium are S pyogenes?> >>

[Guest guest]

> It's a good point. Why do they test for strep and nothing else when

strep is just as " common " as any other flora we carry?

Well that's a good question. I think I mentioned lately how I was told

in my intro micro lecture at GMU that you could isolate pyogenes from

~10-15% of the people in the room at any one time. Perhaps there is a

quantitative element here. Notice how it said " many " small hemolytic

colonies supported the dx of strep throat, in the source I quoted

upthread (which was from some U Wisc website; U Wisc has a highly

regarded micro dept although the page could have been from their

hospital or something). Perhaps those pyogenes-bearers who are walking

around with perfectly nice-feeling throats simply have 1000x less

pyogenes?

Or could it be that no one really cares if 10-15% of sore throats are

misdiagnosed as being caused by strep, due to the presence of

commensal strep carriage in 10-15% of people? After all, 2 weeks of

abx is very unlikely to harm the patient, whereas the consequences of

missing strep can be severe (rheumatic fever, or at least that used to

be the case; I vaguely recall being told that the rheumatic fever

causing strains are no longer common in the US).

Anyway Penny, I'm totally open to any theory. After having thought all

kinds of theories over in the shower 6 billion times over, I just

don't give a damn any more about any of them, I just love playing the

game. But I don't understand what I'm missing. Do your mucosal

surfaces have way *more* Sa and pseudos than normals have (considering

that 33% of people do have Sa there)? What's the difference in exact

terms - what am I going to observe that's different if I have your

swab and some healthy person's? And what did Shoemaker find that was

out of the ordinary (I honestly just don't know thing one about his

staph finding in CFS, having never looked at it).

I understand perfectly well why the isolation of these flora from your

bone significantly implies pathogenicity at that site - because

normals lack these flora in the bone to the best of our knowledge, and

because it's a site where bacteria per se are likely to provoke

inflammation, unlike the mouth's surface. But I don't get the mucosal

surface (mouth nose etc) part.

[Guest guest]

> Or could it be that no one really cares if 10-15% of sore throats are

misdiagnosed as being caused by strep

I meant " could it be no one really cares if 10-15% of *non-strep* sore

throats are misdx as being caused by strep. "

[Guest guest]

Oh, I meant to add, that even *if* there were no currently observable

difference between CFS and normals in regards to Sa, that can't *rule

out* Sa as causative. There's no way really to rule it out, which is

well worth noting, but doesn't get us very far.

[Guest guest]

It gets us really far if you test the organism for it's sensitivities, treat with those drugs and then see improvements in symptoms. You've suddenly eliminated a whole lot of guesswork regarding causation. penny <usenethod@...> wrote: Oh, I meant to add, that even *if* there were no currently observabledifference between CFS and normals in regards to Sa, that can't *ruleout* Sa as causative. There's no way really to rule it out, which

iswell worth noting, but doesn't get us very far.

[Guest guest]

> It gets us really far if you test the organism for it's

sensitivities, treat with those drugs and then see improvements in

symptoms. You've suddenly eliminated a whole lot of guesswork

regarding causation.

But that improvement could be mediated by any bacterium, even one that

hasn't been discovered yet. Most known bacteria, other than

pseudomonads and mycobacteria, are sensitive to most of the marketed

antibacterials (and you'll be taking at least 2 drugs, probably more,

as we all agree). Therefore, I just wouldn't see that as significant

evidence. How many different taxa could possibly be the one that's

being killed to make you feel better? The sky's the limit, as I see

it. Some people think there are a billion bacterial species on earth

(though the species concept may not be terribly clear for bacteria).

Hundreds are known pathogens, and that doesn't include

controversial/ignored/rejected/unconfirmed ones like the

Wirostko/ pathogen, the apparently MS/CFS-related bacterium

discussed in those patents by that guy Luther Lindler at one of the

Texas universities, the Brorson's MS borrelia, pokey lil varmints

isolated from Crohn's by Stanford & Rook or their allies... the list

goes on. An embarrassment of riches, basically.

[Guest guest]

Yeah but...at least the doctor would realize & finally believe that you are suffering from an actual illness! Not a psychological or autoimmune "syndrome". Once the doctor admits that you're actually dealing with a bacterial infection, ANY infection, believe me, the level of care and course of treatment changes radically. Until then, you're lucky to get some supplements or sleep meds. This is why people like myself who have a dx'd bug, or people with lyme, etc., can find at least a few docs willing to help. penny <usenethod@...> wrote: > It gets us really far if you test the organism for it'ssensitivities, treat with those drugs and then see improvements insymptoms. You've suddenly eliminated a whole lot of guessworkregarding causation. But that improvement could be mediated by any bacterium, even one thathasn't been discovered yet. Most known bacteria, other thanpseudomonads and mycobacteria, are sensitive to most of the marketedantibacterials (and you'll be taking at least 2 drugs, probably more,as we all agree). Therefore, I just wouldn't see that as significantevidence. How many different taxa could possibly be the one that'sbeing killed to make you feel better? The sky's the limit, as I seeit. Some people think there are a billion bacterial species on earth(though the species

concept may not be terribly clear for bacteria).Hundreds are known pathogens, and that doesn't includecontroversial/ignored/rejected/unconfirmed ones like theWirostko/ pathogen, the apparently MS/CFS-related bacteriumdiscussed in those patents by that guy Luther Lindler at one of theTexas universities, the Brorson's MS borrelia, pokey lil varmintsisolated from Crohn's by Stanford & Rook or their allies... the listgoes on. An embarrassment of riches, basically.

[Guest guest]

Your missing a lot of valuable information in your quest to make us

understand why doctors don't do tests. Most of us only have BAD TOXIN

PRODUCING STRAINS of bacteria. -NOW THIS IS THE BIGGY- because 'they

take out the competition'- normal folk have a garden variety of

bacteria, not a species or two- they may sprout 12 different species

and a couple of fungus's to boot..They don't have these monsters that

place your first line of defence your skin and mucus membranes at a

complete disadvantage..So information is alway's valuable. I mean Dan

just discovered after almost 10 years of cfs he has a pseudonmads

infection and the fungal like infections he also suffered over the

past ten years may have also been pseudonomas- which is EXTREMELY

VALUABLE INFORMATION.

>

>

> > It gets us really far if you test the organism for it's

> sensitivities, treat with those drugs and then see improvements in

> symptoms. You've suddenly eliminated a whole lot of guesswork

> regarding causation.

>

>

> But that improvement could be mediated by any bacterium, even one

that

> hasn't been discovered yet. Most known bacteria, other than

> pseudomonads and mycobacteria, are sensitive to most of the marketed

> antibacterials (and you'll be taking at least 2 drugs, probably

more,

> as we all agree). Therefore, I just wouldn't see that as significant

> evidence. How many different taxa could possibly be the one that's

> being killed to make you feel better? The sky's the limit, as I see

> it. Some people think there are a billion bacterial species on earth

> (though the species concept may not be terribly clear for bacteria).

> Hundreds are known pathogens, and that doesn't include

> controversial/ignored/rejected/unconfirmed ones like the

> Wirostko/ pathogen, the apparently MS/CFS-related bacterium

> discussed in those patents by that guy Luther Lindler at one of the

> Texas universities, the Brorson's MS borrelia, pokey lil varmints

> isolated from Crohn's by Stanford & Rook or their allies... the list

> goes on. An embarrassment of riches, basically.

>

[Guest guest]

> Your missing a lot of valuable information in your quest to make us

> understand why doctors don't do tests. Most of us only have BAD TOXIN

> PRODUCING STRAINS of bacteria. -NOW THIS IS THE BIGGY- because 'they

> take out the competition'- normal folk have a garden variety of

OK, are we talking Shoemaker here? I decided to look him up. I got

nothing in google scholar or pubmed. I got this from Cort's page,

referring to a conference talk:

" He said that multiple antibiotic resistant staph organisms develop

biofilms in the nasal passages, but don't usually invade. But in

MSH-deficient patients only, these bacteria release hemolysins to

help harvest iron they need from blood cells, and these hemolysins

turn on a cytokine response. Therefore, the MSH will never rise if

these bacteria are present. It takes a special test to find these

bacteria, called an API-staph culture. They also make exotoxins,

which destroy MSH. "

I poked at this loooong post

http://sunshine35446.yuku.com/topic/2181/t/Dr-Shoemaker-and-tests.html

which says it's coag neg staph Shoemaker is concerned with. Is that

true? I didn't know which taxa were coag-neg so I looked it up;

appears to be S epi & team. This paper gives a long list of taxa:

http://www.postgradmed.com/issues/2001/10_01/eiff.htm

The long post mentions the use of Esoterix, etc. But my question is,

what is the observable difference from controls? Do controls have a

lower rate of coag-neg colonization? Is there a quantitative

difference or a difference in the location of the staph? Is there a

difference in toxin production, and if so *how* is this difference in

toxin production demonstrated?

[Guest guest]

> Yeah but...at least the doctor would realize & finally believe that

you are suffering from an actual illness! Not a psychological or

autoimmune " syndrome " . Once the doctor admits that you're actually

dealing with a bacterial infection, ANY infection, believe me, the

level of care and course of treatment changes radically. Until then,

you're lucky to get some supplements or sleep meds. This is why people

like myself who have a dx'd bug, or people with lyme, etc., can find

at least a few docs willing to help.

You think they would shoot me full of abx like a dying cystic fibrosis

patient if I had Sa grow out sensitive to doxy or zith (which I've

responded to)? I don't see that happening. Don't you think the reason

you could find an ID type interested in your case is because of 1.

your bone culture results, and 2. because you are so knowledgeable

about US doctors that have been of help to CFS patients?

[Guest guest]

I.D. docs almost always work with you only when referred by another doc. Since I'm not doing surgery yet, I rely on my g.p. for my treatment. He's a brave soul. But once I get ready for surgery, then I'll want an I.D. doc on the team to more closely monitor my treatment and testing. penny <usenethod@...> wrote: > Yeah but...at least the doctor would realize & finally believe thatyou are suffering from an actual illness! Not a psychological

orautoimmune "syndrome". Once the doctor admits that you're actuallydealing with a bacterial infection, ANY infection, believe me, thelevel of care and course of treatment changes radically. Until then,you're lucky to get some supplements or sleep meds. This is why peoplelike myself who have a dx'd bug, or people with lyme, etc., can findat least a few docs willing to help.You think they would shoot me full of abx like a dying cystic fibrosispatient if I had Sa grow out sensitive to doxy or zith (which I'veresponded to)? I don't see that happening. Don't you think the reasonyou could find an ID type interested in your case is because of 1.your bone culture results, and 2. because you are so knowledgeableabout US doctors that have been of help to CFS patients?

[Guest guest]

This is the key ....Healthy peoples bacteria express a lot

different.I am thinking that most commensals are fine until you hit

the right switch chemically or otherwise- A bit like peanut

allergy ..When the switch is hit they dump toxins in harmony and you

melt down- also the guys in your mouth causing decay need a few

things to fall in to place before they can do there damage.So the

fact that high resistance values has changed these switch's is the

most important aspect of these sinus bugs IMO..

>

>

> > Your missing a lot of valuable information in your quest to make

us

> > understand why doctors don't do tests. Most of us only have BAD

TOXIN

> > PRODUCING STRAINS of bacteria. -NOW THIS IS THE BIGGY-

because 'they

> > take out the competition'- normal folk have a garden variety of

>

>

> OK, are we talking Shoemaker here? I decided to look him up. I got

> nothing in google scholar or pubmed. I got this from Cort's page,

> referring to a conference talk:

>

> " He said that multiple antibiotic resistant staph organisms develop

> biofilms in the nasal passages, but don't usually invade. But in

> MSH-deficient patients only, these bacteria release hemolysins to

> help harvest iron they need from blood cells, and these hemolysins

> turn on a cytokine response. Therefore, the MSH will never rise if

> these bacteria are present. It takes a special test to find these

> bacteria, called an API-staph culture. They also make exotoxins,

> which destroy MSH. "

>

> I poked at this loooong post

>

> http://sunshine35446.yuku.com/topic/2181/t/Dr-Shoemaker-and-

tests.html

>

> which says it's coag neg staph Shoemaker is concerned with. Is that

> true? I didn't know which taxa were coag-neg so I looked it up;

> appears to be S epi & team. This paper gives a long list of taxa:

>

> http://www.postgradmed.com/issues/2001/10_01/eiff.htm

>

> The long post mentions the use of Esoterix, etc. But my question is,

> what is the observable difference from controls? Do controls have a

> lower rate of coag-neg colonization? Is there a quantitative

> difference or a difference in the location of the staph? Is there a

> difference in toxin production, and if so *how* is this difference

in

> toxin production demonstrated?

>

[Guest guest]

Most docs in intensive care for egs. treat with triple therapies even

though the culture results don't yield them a recognisable pathogen..

>

>

> > Yeah but...at least the doctor would realize & finally believe

that

> you are suffering from an actual illness! Not a psychological or

> autoimmune " syndrome " . Once the doctor admits that you're actually

> dealing with a bacterial infection, ANY infection, believe me, the

> level of care and course of treatment changes radically. Until then,

> you're lucky to get some supplements or sleep meds. This is why

people

> like myself who have a dx'd bug, or people with lyme, etc., can find

> at least a few docs willing to help.

>

>

> You think they would shoot me full of abx like a dying cystic

fibrosis

> patient if I had Sa grow out sensitive to doxy or zith (which I've

> responded to)? I don't see that happening. Don't you think the

reason

> you could find an ID type interested in your case is because of 1.

> your bone culture results, and 2. because you are so knowledgeable

> about US doctors that have been of help to CFS patients?

>

[Guest guest]

> different.I am thinking that most commensals are fine until you hit

> the right switch chemically or otherwise- A bit like peanut

> allergy ..When the switch is hit they dump toxins in harmony and you

> melt down-

I agree that you think that. But what has actually been *observed* by

Shoemaker, or you, or anyone?

Relatedly, what you have always said about abx triggering toxin

release is indeed well precedented - and *could* be a cause of some

apparent " herxes. " I have to admit, I never believed you, cause you

never cited anything. But I learned in Micro Path lecture that it

happens with multiple different toxigenic bacterioses - I don't recall

exactly which ones. Of course, that doesn't prove it happens to us,

but it could.