Re: Looking for THINKERS and I know you are here

June 14, 2006

What would be simpler for everyone is if people would attempt to get dx'd for infectious diseases that are acknowledged by medicine and paid for by insurance. Instead of focusing all our efforts on controversial infectious diseases that are hard to test for (like lyme and mycoplasma), why not go after dx's that are pretty uncontestable? For example, the sinus and bone infections that so many of us have (among others). Insurance companies will pay to treat these diseases indefinitely, once you can get the dx. One, because they can't argue the existence of sinus infections, and two, because osteomyelitis (bone infection) is considered life threatening. It takes work to find doctors who want to be bothered to dx chronic infections and treat appropriately (even longer to find ones willing to do bone biopsies) because not only is it labor intensive, long term treatment is

expensive (why do you think lyme docs are under attack?), but once you get one of those kinds of uncontestable dx's, you won't have to worry anymore about your docs being stripped of their licenses or insurance limiting treatment. It's a matter of finding the right doc and the right diagnosis that in the end will get you the testing and treatment you need. Our problem is that we're not choosing our battles wisely. We should be fighting for acknowledgement that chronic illnesses have an infectious basis, period, rather than getting side tracked and obsessed with arguing about one or two infectious diseases that are heavily contested in the medical community. Believe me, the insurance and pharmaceutical companies are happy that we're spending our energy on a losing legal battle over lyme doctors, because that means they can continue to deflect attention from the huge scope of the real problem, which is treatment

resistant organisms are the underlying cause of multiple chronic illnesses. If we started getting thousands of patients demanding proper treatment for common chronic infections (and not settling for things like sinus surgery), they'd no longer be able to hide from the truth. penny a Carnes <pj7@...> wrote: Hey Tony, How about homemade beer from grain stored in mud? That is what caused the Nubian bones to be infiltrated with tetracycline. It would be simpler to do what the Roadback folks do – take minocycline for arthritis. a P{aulaI'm excstatic that they found mycoplasims fermentems in the bone marrow. What was the treatment 3 grapefruits a day and a 2000 dollar pcr test every month.tony> > >> > > Hi, been awhile, but I have been thinking and I was finally able > to > > > form enough of a thought to pose a question. I have been > diagnosed > > > with Lyme and I already knew that I had Myco Fermentans. Was > > > infected with the Lyme at least 38 years ago.> > > > > > I have always been curious as to why I have achieved such a high

> > > state of remission, yet I take nano doses of Minocycline, like 3 > > > mgs. every other day. The sole reason I take such small doses is > I > > > can't stand herxing, and so I take only what I need to, in order > to > > > bring on a tolerable herx. And I do herx herx at this low of a > > dose, > > > makes me real cranky.> > > > > > I have read that Mino some how prevents replication and I also > read > > > somewhere that it prevents Mycoplasma from re-entering new > healthy > > > cells once they have used another cell up. This leaves them > exposed > > > and without a cell wall. One of two things happens, they die of > > > their own accord or they are now visible to our own immune > system, > > > both of which seem like real good

things.> > > > > > I am not the only one that very low dose mino ellicits a > response > > > and others are making some serious headway. Thing is, this flies > in > > > the face of all we are being told which is, massive ABX are a > must.> > > > > > So I posed a questioned on the Lyme board and some of you may > have > > > already seen it. I know that there are some REALLY smart people > > that > > > frequent this board and was hoping that some of you may be able > to > > > add to the discussion, which so far has no real explanation as > to > > > why this might work.> > > > > > I would love it if you are up to the challenge to take a look at > > the > > > discussion and offer what you can. We already know what the Lyme

> > > specialists say, so not really looking for that. This is one of > > > those times when we need to think outside the box yet again. > > > Thinking outside the box is what some of you do best here, so > that > > > is why I am here and asking.> > > > > > Here is a link to the discussion: > > > http://flash. <http://flash.lymenet.org/ubb/ultimatebb.php?>> lymenet.org/ubb/ultimatebb.php?> > > ubb=get_topic;f=1;t=044540> > >> >>

June 14, 2006

Ah Tony,

Now I understand your problem. The simple

solution is coffee enemas.

PJ

a

Streptomyces is a soil bacteria which is what most antibiotics are

made from(tetracyclines as well). Today though they are synthetic,

basically a similar chemical structure.I'm sure that we should start

a movement wherby beer is a known agent of good health- it makes

more sense than the other crap that keeps getting pushed..

I'm still having difficulty treating my MYCO-PLASIMS Infektions-

could you please help. I thinks I got em when a family of

cockroaches crawled up my arse.Remember my last stools pcr it was

showing remnants of bing crosby, how do you

treat that?- maybe a

christmas album may sooth things.

cheers

June 14, 2006

Penny,

I am all for getting whatever diagnosis of

infection will work. The situation is only getting worse. My original diagnosis

was for mycoplasma. My insurance was Blue Cross. It covered massive doses of

antibiotics for years with no questions asked. Now Dr. Joe Jemsek is on trial

today in North Carolina

for treating Lyme in the southeast with high dose and longterm antibiotics.

Blue Cross in NC has refused to cover longterm antibiotics for Lyme. My policy

is with South Carolina.

Will this new policy cross state lines as the ticks do?

I never had any evidence of bone or dental

infections. I certainly have none at this point. Originally my insurance did

whatever any doctor suggested. Now some nurse at the insurance company

diagnoses me sight unseen, something which Dr. got in big trouble for and

is currently on trial – gave a prescription over the phone and then saw

the patient a few days later. Unlike aspirin this is a no no.

I think we may have to all move to Chine

to get any drugs at all.

a

What would be simpler for everyone is if people would attempt

to get dx'd for infectious diseases that are acknowledged by medicine and paid

for by insurance. Instead of focusing all our efforts on controversial

infectious diseases that are hard to test for (like lyme and mycoplasma), why

not go after dx's that are pretty uncontestable? For example,

the sinus and bone infections that so many of us have (among others).

Insurance companies will pay to treat these diseases indefinitely, once you

can get the dx. One, because they can't argue the existence of sinus

infections, and two, because osteomyelitis (bone infection) is considered life

threatening.

It takes work to find doctors who want to be

bothered to dx chronic infections and treat appropriately

(even longer to find ones willing to do bone biopsies) because

not only is it labor intensive, long term treatment is expensive (why do you

think lyme docs are under attack?), but once you get one of those

kinds of uncontestable dx's, you won't have to worry anymore about your

docs being stripped of their licenses or insurance limiting treatment.

It's a matter of finding the right doc and the right diagnosis that in the end

will get you the testing and treatment you need.

Our problem is that we're not choosing our battles wisely. We should be

fighting for acknowledgement that chronic illnesses have an infectious basis,

period, rather than getting side tracked and obsessed with arguing about one or

two infectious diseases that are heavily contested in the medical community.

Believe me, the insurance and pharmaceutical companies are happy that we're

spending our energy on a losing legal battle over lyme doctors, because

that means they can continue to deflect attention from the huge scope of the

real problem, which is treatment resistant organisms are the underlying

cause of multiple chronic illnesses.

If we started getting thousands of patients demanding

proper treatment for common chronic infections (and not

settling for things like sinus surgery), they'd no longer be able to hide

from the truth.

penny

June 14, 2006

a I'm brewing as we speak.The only thing is I fink coffee beans

may contain mycoplasims.

>

> Ah Tony,

>

> Now I understand your problem. The simple solution is coffee

enemas.

>

> PJ

>

> a

> Streptomyces is a soil bacteria which is what most antibiotics are

> made from(tetracyclines as well). Today though they are synthetic,

> basically a similar chemical structure.I'm sure that we should

start

> a movement wherby beer is a known agent of good health- it makes

> more sense than the other crap that keeps getting pushed..

> I'm still having difficulty treating my MYCO-PLASIMS Infektions-

> could you please help. I thinks I got em when a family of

> cockroaches crawled up my arse.Remember my last stools pcr it was

> showing remnants of bing crosby, how do you treat that?- maybe a

> christmas album may sooth things.

> cheers

>

June 14, 2006

I don’t think mycoplasma is

contagious if all you do is drink the coffee. I would not do coffee enemas in

this case. (I hope everyone knows I am kidding. Emails can be confusing.)

PJ

a I'm brewing as we speak.The only thing is I fink

coffee beans

may contain mycoplasims.

>

> Ah Tony,

>

> Now I understand your problem. The simple solution is coffee

enemas.

>

> PJ

>

> a

> Streptomyces is a soil bacteria which is what most antibiotics are

> made from(tetracyclines as well). Today though they are synthetic,

> basically a similar chemical structure.I'm sure that we should

start

> a movement wherby beer is a known agent of good health- it makes

> more sense than the other crap that keeps getting pushed..

> I'm still having difficulty treating my MYCO-PLASIMS Infektions-

> could you please help. I thinks I got em when a family of

> cockroaches crawled up my arse.Remember my last stools pcr it was

> showing remnants of bing crosby, how do

you treat that?- maybe a

> christmas album may sooth things.

> cheers

>

June 14, 2006

> > Remember my last stools pcr it was

> > showing remnants of bing crosby, how do you treat that?- maybe a

> > christmas album may sooth things.

> > cheers

I'm strongly PCR-positive for Homo sapiens too, I just dont know if

its a pathogen or a commensal.

June 14, 2006

Depends on if you are monkey or human.

PJ

I'm strongly PCR-positive for Homo sapiens too, I just dont know if

its a pathogen or a commensal.

June 14, 2006

But what has to be in your sinus for it to be considered a pathogen,

assuming you dont have sinus or upper respiratory symptoms?

Isnt there a flora up there thats supposed to be there? What finding

would we be after?

With bone I guess its much simpler as theres not believed to be a

commensal flora there.

> What would be simpler for everyone is if people would attempt to

get dx'd

> for infectious diseases that are acknowledged by medicine and paid

for by

> insurance. Instead of focusing all our efforts on controversial

infectious

> diseases that are hard to test for (like lyme and mycoplasma), why

not go

> after dx's that are pretty uncontestable? For example, the sinus

and bone

> infections that so many of us have (among others). Insurance

companies will

> pay to treat these diseases indefinitely, once you can get the dx.

One,

> because they can't argue the existence of sinus infections, and

two, because

> osteomyelitis (bone infection) is considered life threatening.

June 14, 2006

>

> > > Remember my last stools pcr it was

> > > showing remnants of bing crosby, how do you treat that?- maybe a

> > > christmas album may sooth things.

> > > cheers

>

> I'm strongly PCR-positive for Homo sapiens too, I just dont know if

> its a pathogen or a commensal.

>

LOL LOL LOL

June 14, 2006

You can't be sick without a sinus infection in this ilness- It's

about 97% of cases. Do yourself a flavour and get to the bottom of

the source of your infection instaed of believeing your fighting

mohammed ali.

Being in no mans land isn't going to help you in the future. The

sinuses shouldn't have pseudonomas aueriganosa, staph areus is

definately another which is guarantee'd to twist your facial

features.I'm not sure if you wanna follow a protocol that is very

flimsy and has no real chance of success or get the hard science and

play in the real field of play.

Again one smart scan and your no longer in the dark. I proved just

adhoc half assed that your head is full of toxic orgnaisms that are

stimulated by being highly resistant to antibiotics, by getting a

few samples.Basically they met all the criteria. Why do yuou think

they pay a huge amount of homage to MRSA and VRE due to there

antibiotic resistance that makes them also highly pathogenic.

>

> But what has to be in your sinus for it to be considered a

pathogen,

> assuming you dont have sinus or upper respiratory symptoms?

>

> Isnt there a flora up there thats supposed to be there? What

finding

> would we be after?

>

> With bone I guess its much simpler as theres not believed to be a

> commensal flora there.

>

> > What would be simpler for everyone is if people would attempt to

> get dx'd

> > for infectious diseases that are acknowledged by medicine and

paid

> for by

> > insurance. Instead of focusing all our efforts on controversial

> infectious

> > diseases that are hard to test for (like lyme and mycoplasma),

why

> not go

> > after dx's that are pretty uncontestable? For example, the sinus

> and bone

> > infections that so many of us have (among others). Insurance

> companies will

> > pay to treat these diseases indefinitely, once you can get the

dx.

> One,

> > because they can't argue the existence of sinus infections, and

> two, because

> > osteomyelitis (bone infection) is considered life threatening.

>

June 14, 2006

Yes, I know. That's why I try to encourage people to look for any obvious infections they may have. I read the forums and people are continuously complaining about all kinds of chronic infections, sinus, dental, upper respiratory, urinary, lymph nodes, you name it, but nobody ever gets insistent with their docs about testing and treating. They think it's a side issue. If people would throw fits about getting these obvious infections dx'd correctly, they might then have a chance to get better and more serious care. I've posted what feels like thousands of times that pseudomonas, streps, staphs, actinomyces are all well known & destructive organisms and almost no one bothers to worry about them or demand to get tested or treated for them. :-( When I first started believing I might be suffering from a chronic infection, the only evidence I had of any infection was a crown that many years before

had been infected, and the fact that I occasionally felt a little pressure in that tooth. Turns out what seemed okay on the outside, was anything but. Same with my sinuses. No obvious signs but when my jaws were scanned, lo and behold, some seriously infected sinuses that had been that way for years & years. My insurance company cannot deny treatment of my sinuses. They could have easily denied treatment of my jaw if it had been dx'd as a "mere" dental problem, but when biopsies showed the bone was infected (osteomyelitis) they could no longer deny any care, including hyperbaric oxygen, i.v. antibiotics, home nursing, etc. penny a Carnes <pj7@...> wrote: Penny, I am all for getting whatever diagnosis of infection will work. The situation is only getting worse. My original diagnosis was for mycoplasma. My insurance was Blue Cross. It covered massive doses of antibiotics for years with no questions asked. Now Dr. Joe Jemsek is on trial today in North Carolina for treating Lyme in the southeast with high dose and longterm antibiotics. Blue Cross in NC has refused to cover longterm antibiotics for Lyme. My policy is

with South Carolina. Will this new policy cross state lines as the ticks do? I never had any evidence of bone or dental infections. I certainly have none at this point. Originally my insurance did whatever any doctor suggested. Now some nurse at the insurance company diagnoses me sight unseen, something which Dr. got in big trouble for and is currently on trial – gave a prescription over the phone and then saw the patient a few days later. Unlike aspirin this is a no no. I think we may have to all move to Chine to get any drugs at all. a What would be simpler for everyone is if people would attempt to get dx'd for infectious diseases that are acknowledged by medicine and paid for by insurance. Instead of focusing all our efforts on controversial infectious diseases that are hard to test for (like lyme and mycoplasma), why not go after dx's that are pretty uncontestable? For example, the sinus and bone infections that so many of us have (among others). Insurance companies will pay to treat these diseases indefinitely, once you can get the dx. One, because they can't argue the existence of sinus infections, and two, because osteomyelitis (bone infection) is considered life threatening. It takes work to find doctors who want to be bothered to dx chronic infections and treat appropriately (even longer to find ones willing to do bone biopsies) because not only is it labor intensive, long term treatment is expensive (why do you think lyme docs are under attack?), but once you get one of those kinds of uncontestable dx's, you won't have to worry anymore about your docs being stripped of their licenses or insurance limiting treatment. It's a matter of finding the right doc and the right diagnosis that in the end will get you the testing and treatment you need. Our problem is that we're not choosing

our battles wisely. We should be fighting for acknowledgement that chronic illnesses have an infectious basis, period, rather than getting side tracked and obsessed with arguing about one or two infectious diseases that are heavily contested in the medical community. Believe me, the insurance and pharmaceutical companies are happy that we're spending our energy on a losing legal battle over lyme doctors, because that means they can continue to deflect attention from the huge scope of the real problem, which is treatment resistant organisms are the underlying cause of multiple chronic illnesses. If we started getting thousands of patients demanding proper treatment for common

chronic infections (and not settling for things like sinus surgery), they'd no longer be able to hide from the truth. penny

June 15, 2006

If you can't find any symptoms to justify an infectious cause, then you're kind of out of luck. The problem is, 9 out of 10 people complain to me about various recurring infections and never connect them to their chronic illness. I had to look hard to find a problem, but when I finally started looking at a slightly bothersome tooth (and I mean slight) a whole new rotten world opened up to me. The bugs were having a field day in my head. And it has very slowly spread to other areas. But no overt symptoms. Took ct scans and bone biopsies before they'd consider taking my sinus swabs seriously. If you do have a sinus infection, as so many of us do, then the trick is to get the doctor to test the organisms that are there, which under normal conditions could actually be "normal" but can also be pathogenic. Test what drugs they're sensitive too, tx with abx, and if you feel better, it's pretty obvious that i's a problem bug. Like Tony says, these bugs wax and wane. One day you'll have a strong growth of one, next day it will be a different one. One day bacteria are big, next day it's fungus. But the point is, when they're out of control you've got to keep testing and keep treating as quickly as they change. Very hard to do under our current medical system. penny <usenethod@...> wrote: But what has to be in your sinus for it to be considered a pathogen, assuming you dont have sinus or upper

respiratory symptoms? Isnt there a flora up there thats supposed to be there? What finding would we be after? With bone I guess its much simpler as theres not believed to be a commensal flora there. > What would be simpler for everyone is if people would attempt to get dx'd> for infectious diseases that are acknowledged by medicine and paid for by> insurance. Instead of focusing all our efforts on controversial infectious> diseases that are hard to test for (like lyme and mycoplasma), why not go> after dx's that are pretty uncontestable? For example, the sinus and bone> infections that so many of us have (among others). Insurance companies will> pay to treat these diseases indefinitely, once you can get the dx. One,> because they can't argue the existence of sinus infections, and two, because> osteomyelitis (bone infection) is considered life

threatening.

June 15, 2006

Hi Penny, I don't know how many times, by how many doctors now, have told me that we all have staph in our nasal cavity and my staph germs are nothing to worry about even though I have facial pain most of the time. Each time I point out that I have antibiotic resistant staph that is abundantly colonized and still no desire to treat.Then I demand that they do a culture and they end up saying each time..."Good news, nothing grew" What am I supposed to do next? Take their hand and have them write the prescription anyway? I have also asked about pseudomonas with infectious disease doctors. The response is the same. We all carry them around for years without any problems. "Why are you so paranoid?" is the common response. Again what are we supposed to do? If we scream and yell I can tell you we are going to end up on the bipolar list. We need to network as a group and put together a page with different doctors we have used

who take our infections seriously. I was told on Monday that I'm colonized with mold. Why did it take two years of going to numerous doctors including mold specialist before I was told this and given an antifungal? One way to demand service is to refuse to pay co pays. I do have a lymph node that needs to be biopsied. I had an ultrasound done by a competent person stating "enlarged lymph node" then I went to the hospital to have a needle biopsy and the guy says it's not a lymph node and won't do the procedure. What then? Scream at him? So I got the bill and I called the hospital and refused to pay it stating I didn't ask for a second opinion ....I wanted a biopsy! She said she would investigate. Then I got a bill stating I still owed the copay. I wrote a letter saying I refuse to pay for treatment I didn't receive and furthermore I hope there are no severe consequences in delaying this treatment while I look for another hospital that can

follow directions of the surgeon. I believe we are going to have to unite in this way because things aren't really going to change for us with the screaming ....IMO ChristiPenny Houle <pennyhoule@...> wrote: Yes, I know. That's why I try to encourage people to look for any obvious infections they may have. I read the forums and people are continuously complaining about all kinds of chronic infections, sinus, dental, upper respiratory, urinary, lymph nodes, you name it, but nobody ever gets insistent with their docs about

testing and treating. They think it's a side issue. If people would throw fits about getting these obvious infections dx'd correctly, they might then have a chance to get better and more serious care. I've posted what feels like thousands of times that pseudomonas, streps, staphs, actinomyces are all well known & destructive organisms and almost no one bothers to worry about them or demand to get tested or treated for them. :-( When I first started believing I might be suffering from a chronic infection, the only evidence I had of any infection was a crown that many years before had been infected, and the fact that I occasionally felt a little pressure in that tooth. Turns out what seemed okay on the outside, was anything but. Same with my sinuses. No obvious signs but when my jaws were scanned, lo and behold, some seriously infected sinuses that had been that way for years & years. My insurance company cannot deny treatment of my sinuses. They could have easily denied treatment of my jaw if it had been dx'd as a "mere" dental problem, but when biopsies showed the bone was infected (osteomyelitis) they could no longer deny any care, including hyperbaric oxygen, i.v. antibiotics, home nursing, etc. penny a Carnes <pj7@...> wrote: Penny, I am all for getting whatever diagnosis of infection will work. The situation is only getting worse. My original diagnosis

was for mycoplasma. My insurance was Blue Cross. It covered massive doses of antibiotics for years with no questions asked. Now Dr. Joe Jemsek is on trial today in North Carolina for treating Lyme in the southeast with high dose and longterm antibiotics. Blue Cross in NC has refused to cover longterm antibiotics for Lyme. My policy is with South Carolina. Will this new policy cross state lines as the ticks do? I never had any evidence of bone or dental infections. I certainly have none at this point. Originally my insurance did whatever any doctor suggested. Now some nurse at the insurance company diagnoses me sight unseen, something which

Dr. got in big trouble for and is currently on trial – gave a prescription over the phone and then saw the patient a few days later. Unlike aspirin this is a no no. I think we may have to all move to Chine to get any drugs at all. a What would be simpler for everyone is if people would attempt to get dx'd for infectious diseases that are acknowledged by medicine and paid for by insurance. Instead of focusing all our efforts on controversial infectious diseases that are hard to test for (like lyme and mycoplasma), why not go after dx's that are pretty uncontestable? For example, the sinus and bone infections that so many of us have (among others). Insurance companies will pay to treat these diseases indefinitely, once you can get

the dx. One, because they can't argue the existence of sinus infections, and two, because osteomyelitis (bone infection) is considered life threatening. It takes work to find doctors who want to be bothered to dx chronic infections and treat appropriately (even longer to find ones willing to do bone biopsies) because not only is it labor intensive, long term treatment is expensive (why do you think lyme docs are under attack?), but once you get one of those kinds of uncontestable dx's, you won't have to worry anymore about your docs being stripped of their licenses or insurance limiting treatment. It's a matter of finding the right doc and the

right diagnosis that in the end will get you the testing and treatment you need. Our problem is that we're not choosing our battles wisely. We should be fighting for acknowledgement that chronic illnesses have an infectious basis, period, rather than getting side tracked and obsessed with arguing about one or two infectious diseases that are heavily contested in the medical community. Believe me, the insurance and pharmaceutical companies are happy that we're spending our energy on a losing legal battle over lyme doctors, because that means they can continue to deflect attention from the huge scope of the real problem, which is treatment resistant organisms are the underlying cause of multiple chronic

illnesses. If we started getting thousands of patients demanding proper treatment for common chronic infections (and not settling for things like sinus surgery), they'd no longer be able to hide from the truth. penny __________________________________________________

June 15, 2006

I'm going to have my 5th sinus surgery in a couple of

weeks. The Dr. has assured me he will do cultures. I

have had infection in my head since 1987. Your post is

discouraging. I finally have a Dr. who will culture

and it sounds like that isn't enough. The good news is

that I am under the care of a rhuematologist who is

perscribing multible antibiotics so I am hoping that

between the 2 of them I will eventually get cleared of

infection. Of course I wonder sometimes if the problem

is with the immune system and I will never be able to

clear them all.

Marie

--- Penny Houle <pennyhoule@...> wrote:

> If you can't find any symptoms to justify an

> infectious cause, then you're kind of out of luck.

> The problem is, 9 out of 10 people complain to me

> about various recurring infections and never connect

> them to their chronic illness. I had to look hard to

> find a problem, but when I finally started looking

> at a slightly bothersome tooth (and I mean slight) a

> whole new rotten world opened up to me. The bugs

> were having a field day in my head. And it has very

> slowly spread to other areas. But no overt symptoms.

> Took ct scans and bone biopsies before they'd

> consider taking my sinus swabs seriously.

>

> If you do have a sinus infection, as so many of us

> do, then the trick is to get the doctor to test the

> organisms that are there, which under normal

> conditions could actually be " normal " but can also

> be pathogenic. Test what drugs they're sensitive

> too, tx with abx, and if you feel better, it's

> pretty obvious that i's a problem bug.

>

> Like Tony says, these bugs wax and wane. One day

> you'll have a strong growth of one, next day it will

> be a different one. One day bacteria are big, next

> day it's fungus. But the point is, when they're out

> of control you've got to keep testing and keep

> treating as quickly as they change. Very hard to do

> under our current medical system.

>

> penny

>

> <usenethod@...> wrote:

> But what has to be in your sinus for it to

> be considered a pathogen,

> assuming you dont have sinus or upper respiratory

> symptoms?

>

> Isnt there a flora up there thats supposed to be

> there? What finding

> would we be after?

>

> With bone I guess its much simpler as theres not

> believed to be a

> commensal flora there.

>

> > What would be simpler for everyone is if people

> would attempt to

> get dx'd

> > for infectious diseases that are acknowledged by

> medicine and paid

> for by

> > insurance. Instead of focusing all our efforts on

> controversial

> infectious

> > diseases that are hard to test for (like lyme and

> mycoplasma), why

> not go

> > after dx's that are pretty uncontestable? For

> example, the sinus

> and bone

> > infections that so many of us have (among others).

> Insurance

> companies will

> > pay to treat these diseases indefinitely, once you

> can get the dx.

> One,

> > because they can't argue the existence of sinus

> infections, and

> two, because

> > osteomyelitis (bone infection) is considered life

> threatening.

>

__________________________________________________

June 15, 2006

Marie

You MUST ESTABLISH a STRONG PRIORITY with your doctor that his lab

reports everything- I have been sent over 100 swabs and never ever

do I grow NADA...Unfortunately the labs and doctors are so far

appart in medicine that conditions like these are allowed to

flourish.

If you had a microbiologist observing the fascial destruction of

these organisms these conditions wouldn't last a month.Also you have

a surgeon and a doctor has no idea what the surgeon is seeing- so

your stuck.But the good news is that if you do your homework and

take some control of what is going to happen your outcome can be

alot better.BAsically don't sit in the docs office like a wood duck,

these people are spoiled lazy asses and if you don't develop and use

a GREAT STRATEGY....stuck again.

I have friends that work wonderfully with there doctors and I see

cases of people that sit in front of doctors 33 times a year and

just go thru the motions(such a waste).

Often you really don't have a caring doctor- I would also complain

like-I have alot of pressure on my left cheek that seems to radiate

to my left hip.. I don't care what you think but for me this is

disseminating from my sinus region and I need it taken care of

appropriately not half assed.

> > But what has to be in your sinus for it to

> > be considered a pathogen,

> > assuming you dont have sinus or upper respiratory

> > symptoms?

> >

> > Isnt there a flora up there thats supposed to be

> > there? What finding

> > would we be after?

> >

> > With bone I guess its much simpler as theres not

> > believed to be a

> > commensal flora there.

> >

> > > What would be simpler for everyone is if people

> > would attempt to

> > get dx'd

> > > for infectious diseases that are acknowledged by

> > medicine and paid

> > for by

> > > insurance. Instead of focusing all our efforts on

> > controversial

> > infectious

> > > diseases that are hard to test for (like lyme and

> > mycoplasma), why

> > not go

> > > after dx's that are pretty uncontestable? For

> > example, the sinus

> > and bone

> > > infections that so many of us have (among others).

> > Insurance

> > companies will

> > > pay to treat these diseases indefinitely, once you

> > can get the dx.

> > One,

> > > because they can't argue the existence of sinus

> > infections, and

> > two, because

> > > osteomyelitis (bone infection) is considered life

> > threatening.

> >

>

> __________________________________________________

>

June 15, 2006

This is what I'd do if I were you. Insist that he not let the lab throw any flora out and to test the organisms' resistances and sensitivities. Tell him that a microbiologist said that if you label your requests "deep wound" cultures, the lab is less likely to throw away growths as "normal flora". Tell him you are convinced you have resistant organisms, because surgery is not working. Tell him that it is extremely well researched and documented that staph aureus and pseudomonas are common to sinus infections, and both are very resistant bugs, and even though these bugs are often considered by labs to be normal flora, you don't care, because you can't clear your infections and you want the bugs gone and the only way to do that is find out what they are and what they're sensitive to. You might ask him if he's capable of testing for actinomyces as well (this organism is temperature

and time sensitive in its handling). Hopefully he'll keep testing you until your bugs are gone, but keep at it. And if all else fails and he turns you away, try the Stanford betadine nasal rinse. But don't let him pass this off as some kind of other "immune" system problem. Bacteria are insanely resilient and resistant to treatment. Don't let him give up, or keep doing more surgeries (unless he has to repair a botched job that's caused more problems_. penny Marie Mayberry <msmabrry@...> wrote: I'm going to have my 5th sinus surgery in a couple ofweeks. The Dr. has assured me he will do cultures. Ihave had infection in my head since 1987. Your post isdiscouraging. I finally have a Dr. who will cultureand it sounds like that isn't enough. The good news isthat I am under the care of a rhuematologist who isperscribing multible antibiotics so I am hoping thatbetween the 2 of them I will eventually get cleared ofinfection. Of course I wonder sometimes if the problemis with the immune system and I will never be able toclear them all. Marie--- Penny Houle <pennyhoule > wrote:> If you can't find any symptoms to justify an> infectious cause, then you're kind of out of luck.> The problem is, 9 out of 10 people complain to me> about various recurring

infections and never connect> them to their chronic illness. I had to look hard to> find a problem, but when I finally started looking> at a slightly bothersome tooth (and I mean slight) a> whole new rotten world opened up to me. The bugs> were having a field day in my head. And it has very> slowly spread to other areas. But no overt symptoms.> Took ct scans and bone biopsies before they'd> consider taking my sinus swabs seriously. > > If you do have a sinus infection, as so many of us> do, then the trick is to get the doctor to test the> organisms that are there, which under normal> conditions could actually be "normal" but can also> be pathogenic. Test what drugs they're sensitive> too, tx with abx, and if you feel better, it's> pretty obvious that i's a problem bug. > > Like Tony says, these bugs wax and wane. One day> you'll have a strong

growth of one, next day it will> be a different one. One day bacteria are big, next> day it's fungus. But the point is, when they're out> of control you've got to keep testing and keep> treating as quickly as they change. Very hard to do> under our current medical system. > > penny> > <usenethod > wrote:> But what has to be in your sinus for it to> be considered a pathogen, > assuming you dont have sinus or upper respiratory> symptoms? > > Isnt there a flora up there thats supposed to be> there? What finding > would we be after? > > With bone I guess its much simpler as theres not> believed to be a > commensal flora there. > > > What would be simpler for everyone is if people> would attempt to > get dx'd> > for

infectious diseases that are acknowledged by> medicine and paid > for by> > insurance. Instead of focusing all our efforts on> controversial > infectious> > diseases that are hard to test for (like lyme and> mycoplasma), why > not go> > after dx's that are pretty uncontestable? For> example, the sinus > and bone> > infections that so many of us have (among others).> Insurance > companies will> > pay to treat these diseases indefinitely, once you> can get the dx. > One,> > because they can't argue the existence of sinus> infections, and > two, because> > osteomyelitis (bone infection) is considered life> threatening. > > > > > __________________________________________________

June 15, 2006

OK, here goes, I will tell you how we are in fact slipping further and further away from having our infections diagnosed and treated. The doctor I consulted last week is quite typical not even VERY bad, just an average guy toeing the line.

Last Tuesday, I started to get what I thought was a viral sore throat, by Wednesday I thought "gee this sore throat is getting pretty bad", I woke up Thursday with white patches on my tonsils, throat all swollen and in excrutiating pain. I thought I had no choice, had to go to the quack for abx that would knock this ?strep? down.

The quack gives me all his well-oiled, well-learnt public health spiel "No proof it is bacterial, you know abx are no always needed, bla, bla, bla" I insist, he swabs my throat and performs his "mickey mouse" quick strep test in his office. Ten minutes later he proudly declares me "strepfree". I insist again, I know this is bacterial (in fact I think i have never had so much pain from a sore throat), he looks annoyed but as my husband is in the office with me (always go to doc with a man if you're a gal-terribly politically incorrect of me to say so but you'd be amazed what a difference a man makes in a doc's office), he agrees to order a swab/culture/sensitivity to abx to be done in a lab.

I am in absolute agony, throat is white, red and swollen like it has never been. The test will take a few days. I am trying to hang on until I get the results, pure agony. By Sat morning I am so bad I decide to bribe the chemist into selling me augmentin and I "augment" it further with amoxycilline, it helps some but not dramatically. By Monday I get the results "strep pneumoniae" sensitive to penicilin but only to very high dose amoxi. It is also sensitive to cephalosporins but I think I have a prob with them. In the end, I settle on the old pristinamycine (that only Agent Bleu knows, as it is not sold in many countries). After 3 days on the pristinamycine I am feeling today that it looks like I am pulling through, albeit slowly.

Now, here we are talking OBVIOUS, SCREAMING infection, that any nurse or any mother would recognise, but doctors are so reluctant to diagnose and treat bacterial infections these days that even a bad, bad strep throat is not diagnosed. What can one expect with more occult, more controversial infections? Things are getting real, real bad, worse by the minute in fact. Public Health Authorities have got our doctors scared to death, if they prescribe abx they get onto a black list immediately, so every doctor's aim in life these days is to NOT precribe abx. A friend's daughter had the same strep throat last week and her doc only gave her some kind of throat disinfectant to nebulise. The poor kid was also in terrible pain, but obviously her immune system is better than mine she seems better (not well though).

I am so angry that I could not allow myself to ring the quack back. I let my husband do the ringing to get a script for the already consumed augmentin and for the pristinamycin.He willingly does both as now he is "covered" by my test results, but no acknowledgement of error, no apologies, no regrets for the unnecessary pain I endured for days on end nor for the danger he exposed me to by letting a strep throat go untreated for nearly a week. Plus of course the fact that his stupid test was wrong and that he uses it with babies and young children to decide whether to give them abx for throat infections.

They are actively trying to negate the reality of infections (even acute infections) so i really don't like our chances of getting anywhere with notions of slow brewing infections, no hope!

Nelly (in France)

RE: [infections] Re: Looking for THINKERS and I know you are here

Hi Penny,

I don't know how many times, by how many doctors now, have told me that we all have staph in our nasal cavity and my staph germs are nothing to worry about even though I have facial pain most of the time. Each time I point out that I have antibiotic resistant staph that is abundantly colonized and still no desire to treat.Then I demand that they do a culture and they end up saying each time..."Good news, nothing grew" What am I supposed to do next? Take their hand and have them write the prescription anyway? I have also asked about pseudomonas with infectious disease doctors. The response is the same. We all carry them around for years without any problems. "Why are you so paranoid?" is the common response. Again what are we supposed to do? If we scream and yell I can tell you we are going to end up on the bipolar list.

We need to network as a group and put together a page with different doctors we have used who take our infections seriously. I was told on Monday that I'm colonized with mold. Why did it take two years of going to numerous doctors including mold specialist before I was told this and given an antifungal?

One way to demand service is to refuse to pay co pays. I do have a lymph node that needs to be biopsied. I had an ultrasound done by a competent person stating "enlarged lymph node" then I went to the hospital to have a needle biopsy and the guy says it's not a lymph node and won't do the procedure. What then? Scream at him? So I got the bill and I called the hospital and refused to pay it stating I didn't ask for a second opinion ....I wanted a biopsy! She said she would investigate. Then I got a bill stating I still owed the copay. I wrote a letter saying I refuse to pay for treatment I didn't receive and furthermore I hope there are no severe consequences in delaying this treatment while I look for another hospital that can follow directions of the surgeon. I believe we are going to have to unite in this way because things aren't really going to change for us with the screaming ....IMO

ChristiPenny Houle <pennyhoule@...> wrote:

Yes, I know. That's why I try to encourage people to look for any obvious infections they may have. I read the forums and people are continuously complaining about all kinds of chronic infections, sinus, dental, upper respiratory, urinary, lymph nodes, you name it, but nobody ever gets insistent with their docs about testing and treating. They think it's a side issue. If people would throw fits about getting these obvious infections dx'd correctly, they might then have a chance to get better and more serious care. I've posted what feels like thousands of times that pseudomonas, streps, staphs, actinomyces are all well known & destructive organisms and almost no one bothers to worry about them or demand to get tested or treated for them. :-(

When I first started believing I might be suffering from a chronic infection, the only evidence I had of any infection was a crown that many years before had been infected, and the fact that I occasionally felt a little pressure in that tooth. Turns out what seemed okay on the outside, was anything but. Same with my sinuses. No obvious signs but when my jaws were scanned, lo and behold, some seriously infected sinuses that had been that way for years & years.

My insurance company cannot deny treatment of my sinuses. They could have easily denied treatment of my jaw if it had been dx'd as a "mere" dental problem, but when biopsies showed the bone was infected (osteomyelitis) they could no longer deny any care, including hyperbaric oxygen, i.v. antibiotics, home nursing, etc.

penny

a Carnes <pj7@...> wrote:

Penny,

I am all for getting whatever diagnosis of infection will work. The situation is only getting worse. My original diagnosis was for mycoplasma. My insurance was Blue Cross. It covered massive doses of antibiotics for years with no questions asked. Now Dr. Joe Jemsek is on trial today in North Carolina for treating Lyme in the southeast with high dose and longterm antibiotics. Blue Cross in NC has refused to cover longterm antibiotics for Lyme. My policy is with South Carolina. Will this new policy cross state lines as the ticks do?

I never had any evidence of bone or dental infections. I certainly have none at this point. Originally my insurance did whatever any doctor suggested. Now some nurse at the insurance company diagnoses me sight unseen, something which Dr. got in big trouble for and is currently on trial – gave a prescription over the phone and then saw the patient a few days later. Unlike aspirin this is a no no.

I think we may have to all move to Chine to get any drugs at all.

a

What would be simpler for everyone is if people would attempt to get dx'd for infectious diseases that are acknowledged by medicine and paid for by insurance. Instead of focusing all our efforts on controversial infectious diseases that are hard to test for (like lyme and mycoplasma), why not go after dx's that are pretty uncontestable? For example, the sinus and bone infections that so many of us have (among others). Insurance companies will pay to treat these diseases indefinitely, once you can get the dx. One, because they can't argue the existence of sinus infections, and two, because osteomyelitis (bone infection) is considered life threatening.

It takes work to find doctors who want to be bothered to dx chronic infections and treat appropriately (even longer to find ones willing to do bone biopsies) because not only is it labor intensive, long term treatment is expensive (why do you think lyme docs are under attack?), but once you get one of those kinds of uncontestable dx's, you won't have to worry anymore about your docs being stripped of their licenses or insurance limiting treatment. It's a matter of finding the right doc and the right diagnosis that in the end will get you the testing and treatment you need.

Our problem is that we're not choosing our battles wisely. We should be fighting for acknowledgement that chronic illnesses have an infectious basis, period, rather than getting side tracked and obsessed with arguing about one or two infectious diseases that are heavily contested in the medical community. Believe me, the insurance and pharmaceutical companies are happy that we're spending our energy on a losing legal battle over lyme doctors, because that means they can continue to deflect attention from the huge scope of the real problem, which is treatment resistant organisms are the underlying cause of multiple chronic illnesses.

If we started getting thousands of patients demanding proper treatment for common chronic infections (and not settling for things like sinus surgery), they'd no longer be able to hide from the truth.

penny

__________________________________________________

June 15, 2006

<pennyhoule@...> wrote in part:

> If you do have a sinus infection, as so many of us do, then the

trick is to get the doctor to test the organisms that are there,

which under normal conditions could actually be " normal " but can also

be pathogenic. Test what drugs they're sensitive too, tx with abx,

and if you feel better, it's pretty obvious that i's a problem bug.

I would only conclude that if I responded to multiple of the drugs

its sensitive to, and didnt respond to multiple of the drugs its not

sensitive to. The presence of X at the site of symptoms doesnt prove

that X is the cause. And the chances that X is sensitive to any given

abx are pretty high, so its not something I'd draw strong conclusions

from.

Look at crohns. Even tho theres no proof and other scenarios are

conceivable, we probably all agree that most cases are probably

caused by invasive bacterial infection. But you wouldnt recover an

expected organism like Lactobacillus from a stool sample and conclude

that its the cause of crohns on account of it being sensitive to the

abx that have been so effective in crohns. Nor recover an expected

organism like propionibacteria from the surface of psoriasis and

determine they cause the psoriasis. I dont know if the nose or

sinuses have as much bacterial growth as the GI or skin, but they are

next to the mouth, which is a septic area with more bugs than you can

shake a stick at.

Which is not to say staph or pseudos dont cause symptoms - its just

that I dont see why you conclude that they almost certainly do.

June 15, 2006

nelly same happened with me GF. (I caught it of her) she went on for a

few months, first with dr RX zitro that did not work, so went to spain

picked up some more, still did not work, went to see specialist, that

was a complete waste of time and put her back another few weeks, then

she went to a good doc in Switzaland, he, did the micky mouse test,

found nothing, but armed with my advice she insisted on axb, he rxed a

weeks worth, by this time it was running a muck and a weeks worth was

not anywhere near enough, she came back and we ended up pulling some

strings like you did to get some prsitamycine and she was on this in a

highish dose for about 6 weeks. Its seems to be down now, but it was a

major struggle and i caught it too many times, and have had to keep

arms length and gargle with salt for months now.

In france there are big campaines on radio tv etc telling DRs not to rx

abx.

bleu

On 15 Jun 2006, at 18:28, Nelly Pointis wrote:

> OK, here goes, I will tell you how we are in fact slipping further and

> further away from having our infections diagnosed and treated. The

> doctor I consulted last week is quite typical not even VERY bad, just

> an average guy toeing the line.

> Â

> LastÂ Tuesday, I started to get what I thought was a viral sore throat,

> by Wednesday I thought " gee thisÂ sore throat isÂ getting pretty bad " , I

> woke up Thursday with white patches on my tonsils, throat all swollen

> and in excrutiating pain. IÂ thought I had no choice, had to go to the

> quack for abx that would knock this ?strep? down.Â

> Â

> The quack gives me all his well-oiled, well-learnt public health spiel

> " No proof it is bacterial, you know abx are no always needed, bla,

> bla, bla " I insist, he swabs my throat and performs his " mickey mouse "

> quick strep test in his office. Ten minutes later he proudly declares

> me " strepfree " . I insist again, I know this is bacterial (in fact I

> think i have never had so much pain from a sore throat), he looks

> annoyed but as my husband is in the office with me (always go to doc

> with a man if you're a gal-terribly politically incorrect of me to say

> so but you'd be amazedÂ what a difference a man makes in a doc's

> office), he agrees to order a swab/culture/sensitivity to abx to be

> done in a lab.

> Â

> Â I am in absolute agony, throat is white, red and swollen like it has

> never been. The test will take a few days.Â I am trying to hang on

> until I get the results, pure agony. By Sat morning I am so bad I

> decide to bribe the chemist into selling me augmentin and I " augment "

> it further with amoxycilline, it helps some but not dramatically. By

> Monday I get the results " strep pneumoniae " sensitive to penicilin but

> only to very high dose amoxi. It is also sensitive to cephalosporins

> but I think I have a prob with them. In the end, I settle on the old

> pristinamycine (that only Agent Bleu knows, as it is not sold in many

> countries). After 3 days on the pristinamycine I am feeling today that

> it looks like I am pulling through, albeit slowly.

> Â

> Now, here we are talkingÂ OBVIOUS, SCREAMINGÂ infection, that any nurse

> or any mother would recognise, but doctors are so reluctant to

> diagnose and treatÂ bacterial infections these days that even a bad,

> bad strep throat is not diagnosed. What can one expect with more

> occult, more controversial infections? Things are getting real, real

> bad, worse by the minute in fact. Public Health Authorities have got

> our doctors scared to death, if they prescribe abx they get onto a

> black list immediately, so every doctor's aim in life these days is to

> NOT precribe abx. A friend's daughter had the same strep throat last

> week and her doc only gave her some kind of throat disinfectant to

> nebulise. The poor kid was also in terrible pain, but obviously her

> immune system is better than mine she seems better (not well though).

> Â

> I am so angry that I could not allow myself to ring the quack back. I

> let my husband do the ringing to get a script for the already consumed

> augmentin and for the pristinamycin.He willingly does both as now he

> is " covered " by my test results, but no acknowledgement of error, no

> apologies, no regrets for the unnecessary pain I endured for days on

> end nor for the danger he exposed me to by letting a strep throat go

> untreated for nearly a week. Plus of course the fact that his stupid

> test was wrong and that he uses it with babies and young children to

> decide whether to give them abx for throat infections.

> Â

> They are actively trying to negate the reality of infections (even

> acute infections) so i really don't like our chances of getting

> anywhere with notions of slow brewing infections, no hope!

> Â

> Nelly (in France)

> Â

>> RE: [infections] Re: Looking for THINKERS and

>> I know you are here

>>

>> Hi Penny,

>> I don't know how many times, by how many doctors now, have told me

>> that we all have staph in our nasal cavity and my staph germsÂ are

>> nothing to worry about even though I have facial pain most of the

>> time. Each time I point out that I have antibiotic resistant staph

>> that is abundantly colonized and still no desire to treat.Then I

>> demand that they do a culture and they end up saying each

>> time... " Good news, nothing grew " What am I supposed to do next? Take

>> their hand and have them write the prescription anyway? I have also

>> asked about pseudomonas with infectious disease doctors. The response

>> is the same. We all carry them around for years without any problems.

>> " Why are you so paranoid? " is the common response. Again what are we

>> supposed to do? If we scream and yell I can tell you we are going to

>> end up on the bipolar list.

>> Â

>> We need to network as a group and put together a page with different

>> doctors we have used who take our infections seriously. I was told on

>> Monday that I'm colonized with mold. Why did it take two years of

>> going to numerous doctors including mold specialist before I was told

>> this and given an antifungal?

>> Â

>> One way to demand service is to refuse to pay co pays. I do have a

>> lymph node that needs to be biopsied. I had an ultrasound done by a

>> competent person stating " enlarged lymph node " then I went to the

>> hospital to have a needle biopsy and the guy says it's not a lymph

>> node and won't do the procedure. What then? Scream at him? So I got

>> the bill and I called the hospital and refused to pay it stating I

>> didn't ask for a second opinion ....I wanted a biopsy! She said she

>> would investigate. Then I got a bill stating I still owed the copay.

>> I wrote a letter saying I refuse to pay for treatment I didn't

>> receive and furthermore I hope there are no severe consequences in

>> delaying this treatment while I look for another hospital that can

>> follow directions of the surgeon. I believe we are going to have to

>> unite in this way because things aren't really going to change for us

>> with the screaming ....IMO

>> Christi

>>

>> Penny Houle <pennyhoule@...> wrote:

>>> Yes, I know. That's why I try to encourage people to look for any

>>> obvious infections they may have. IÂ read the forums and people are

>>> continuously complaining about all kinds of chronic infections,

>>> sinus, dental, upper respiratory, urinary, lymph nodes, you name it,

>>> but nobody ever gets insistent with their docs about testing and

>>> treating. They think it's a side issue. If people would throwÂ fits

>>> about getting theseÂ obvious infectionsÂ dx'd correctly, they might

>>> then have a chance to get better and more serious care. I've posted

>>> what feels like thousands of times that pseudomonas, streps, staphs,

>>> actinomyces are all well known & Â destructive organisms and almost no

>>> one bothers to worry about them or demand to get tested or

>>> treatedÂ for them. :-(

>>> Â

>>> When I first started believing I might be suffering from a chronic

>>> infection, the only evidence I had of any infectionÂ was a crown that

>>> many years before had been infected, and the fact that I

>>> occasionally felt a little pressure in that tooth. Turns out what

>>> seemed okay on the outside, was anything but. Same with my sinuses.

>>> No obvious signs but when my jaws wereÂ scanned, lo and behold, some

>>> seriously infected sinuses that had been that way for years & years.

>>> Â

>>> My insurance company cannot deny treatment of my sinuses. They could

>>> have easily denied treatment of my jaw if it had been dx'd as a

>>> " mere " dental problem, but when biopsies showed the bone was

>>> infected (osteomyelitis) they could no longer deny any care,

>>> includingÂ hyperbaric oxygen, i.v. antibiotics, home nursing, etc.Â

>>> Â

>>> penny

>>>

>>> a Carnes <pj7@...> wrote:

>>>> Penny,

>>>> I am all for getting whatever diagnosis of infection will work. The

>>>> situation is only getting worse. My original diagnosis was for

>>>> mycoplasma. My insurance was Blue Cross. It covered massive doses

>>>> of antibiotics for years with no questions asked. Now Dr. Joe

>>>> Jemsek is on trial today in North Carolina for treating Lyme in the

>>>> southeast with high dose and longterm antibiotics. Blue Cross in NC

>>>> has refused to cover longterm antibiotics for Lyme. My policy is

>>>> with South Carolina. Will this new policy cross state lines as the

>>>> ticks do?

>>>> I never had any evidence of bone or dental infections. I certainly

>>>> have none at this point. Originally my insurance did whatever any

>>>> doctor suggested. Now some nurse at the insurance company diagnoses

>>>> me sight unseen, something which Dr. got in big trouble for

>>>> and is currently on trial â€“ gave a prescription over the phone and

>>>> then saw the patient a few days later. Unlike aspirin this is a no

>>>> no.

>>>> I think we may have to all move to Chine to get any drugs at all.

>>>> a

>>>> What would be simplerÂ for everyone isÂ if people would attempt to

>>>> get dx'd for infectious diseases that are acknowledged by medicine

>>>> and paid for by insurance. Instead of focusing all our efforts on

>>>> controversial infectious diseases that are hard to test for (like

>>>> lyme and mycoplasma), why not go after dx's that are pretty

>>>> uncontestable?Â For example, theÂ sinus and bone infections that so

>>>> many of us have (among others). Insurance companies will pay to

>>>> treat these diseasesÂ indefinitely, once you can get the dx. One,

>>>> because they can't argue the existence of sinus infections, and

>>>> two, because osteomyelitis (bone infection) is considered life

>>>> threatening.

>>>> It takes workÂ to find doctors whoÂ want toÂ be botheredÂ to

>>>> dxÂ chronicÂ infections and treat appropriately (evenÂ longer to find

>>>> ones willingÂ toÂ do bone biopsies) because not only is it labor

>>>> intensive, long term treatment is expensive (why do you think lyme

>>>> docs are under attack?),Â but once you get one ofÂ those kinds

>>>> ofÂ uncontestable dx's, you won't have to worry anymore about your

>>>> docs being stripped of their licensesÂ or insurance limiting

>>>> treatment. It's a matter of finding the right doc and the right

>>>> diagnosis that in the end will get you the testing and treatment

>>>> you need.

>>>> Our problem is that we're not choosing our battles wisely. We

>>>> should be fighting for acknowledgement that chronic illnesses have

>>>> an infectious basis, period, rather than getting side tracked and

>>>> obsessed with arguing about one or two infectious diseases that are

>>>> heavily contested in the medical community. Believe me, the

>>>> insurance and pharmaceutical companies are happy that we're

>>>> spending our energy on a losingÂ legal battle over lyme doctors,

>>>> because that means they can continue to deflect attention from the

>>>> huge scope of the realÂ problem, which is treatment resistant

>>>> organisms are the underlying cause of multiple chronic illnesses.

>>>> If we started getting thousands ofÂ patientsÂ demanding

>>>> properÂ treatmentÂ forÂ common chronicÂ infections (and not settling

>>>> for things like sinus surgery), they'd no longer be able toÂ hide

>>>> fromÂ the truth.

>>>> penny

>>>

>>

>> __________________________________________________

>>

June 15, 2006

ï»¿

Bleu,

I thought one could no longer buy abx without a script in Spain. They passed a law about 18mths ago I think. How are you still buying your abx there?

Do you remember what dose pristinamycine your GF was on? I am taking 3g/day and I weigh about 70 kg (I'm tall).

Yes, after rxing abx as if they were lollies for decades in France, they are now refusing to rx them when they are absolutely needed.

My ID prof here in Paris is still battling a very lone battle, going to highly respected to ridiculed by his peers for taking chronic bacterial infections seriously. He has to keep a fairly low profile and not rock the board too hard, or he'll be shot down in flames. The way he describes what he has to do is a bit like being in an underground resistance organisation, you have to be really careful if you want to remain useful.

One of the problems he has a lot of problems with is getting good testing performed.

Nelly

RE: [infections] Re: Looking for THINKERS and I know you are hereHi Penny,

I don't know how many times, by how many doctors now, have told me that we all have staph in our nasal cavity and my staph germs are nothing to worry about even though I have facial pain most of the time. Each time I point out that I have antibiotic resistant staph that is abundantly colonized and still no desire to treat.Then I demand that they do a culture and they end up saying each time..."Good news, nothing grew" What am I supposed to do next? Take their hand and have them write the prescription anyway? I have also asked about pseudomonas with infectious disease doctors. The response is the same. We all carry them around for years without any problems. "Why are you so paranoid?" is the common response. Again what are we supposed to do? If we scream and yell I can tell you we are going to end up on the bipolar list.

We need to network as a group and put together a page with different doctors we have used who take our infections seriously. I was told on Monday that I'm colonized with mold. Why did it take two years of going to numerous doctors including mold specialist before I was told this and given an antifungal?

One way to demand service is to refuse to pay co pays. I do have a lymph node that needs to be biopsied. I had an ultrasound done by a competent person stating "enlarged lymph node" then I went to the hospital to have a needle biopsy and the guy says it's not a lymph node and won't do the procedure. What then? Scream at him? So I got the bill and I called the hospital and refused to pay it stating I didn't ask for a second opinion ....I wanted a biopsy! She said she would investigate. Then I got a bill stating I still owed the copay. I wrote a letter saying I refuse to pay for treatment I didn't receive and furthermore I hope there are no severe consequences in delaying this treatment while I look for another hospital that can follow directions of the surgeon. I believe we are going to have to unite in this way because things aren't really going to change for us with the screaming ....IMO

Christi

Penny Houle <pennyhoule@...> wrote:

Yes, I know. That's why I try to encourage people to look for any obvious infections they may have. I read the forums and people are continuously complaining about all kinds of chronic infections, sinus, dental, upper respiratory, urinary, lymph nodes, you name it, but nobody ever gets insistent with their docs about testing and treating. They think it's a side issue. If people would throw fits about getting these obvious infections dx'd correctly, they might then have a chance to get better and more serious care. I've posted what feels like thousands of times that pseudomonas, streps, staphs, actinomyces are all well known & destructive organisms and almost no one bothers to worry about them or demand to get tested or treated for them. :-(

When I first started believing I might be suffering from a chronic infection, the only evidence I had of any infection was a crown that many years before had been infected, and the fact that I occasionally felt a little pressure in that tooth. Turns out what seemed okay on the outside, was anything but. Same with my sinuses. No obvious signs but when my jaws were scanned, lo and behold, some seriously infected sinuses that had been that way for years & years.

My insurance company cannot deny treatment of my sinuses. They could have easily denied treatment of my jaw if it had been dx'd as a "mere" dental problem, but when biopsies showed the bone was infected (osteomyelitis) they could no longer deny any care, including hyperbaric oxygen, i.v. antibiotics, home nursing, etc.

penny

a Carnes <pj7@...> wrote:

Penny,I am all for getting whatever diagnosis of infection will work. The situation is only getting worse. My original diagnosis was for mycoplasma. My insurance was Blue Cross. It covered massive doses of antibiotics for years with no questions asked. Now Dr. Joe Jemsek is on trial today in North Carolina for treating Lyme in the southeast with high dose and longterm antibiotics. Blue Cross in NC has refused to cover longterm antibiotics for Lyme. My policy is with South Carolina. Will this new policy cross state lines as the ticks do?I never had any evidence of bone or dental infections. I certainly have none at this point. Originally my insurance did whatever any doctor suggested. Now some nurse at the insurance company diagnoses me sight unseen, something which Dr. got in big trouble for and is currently on trial â€“ gave a prescription over the phone and then saw the patient a few days later. Unlike aspirin this is a no no.I think we may have to all move to Chine to get any drugs at all.aWhat would be simpler for everyone is if people would attempt to get dx'd for infectious diseases that are acknowledged by medicine and paid for by insurance. Instead of focusing all our efforts on controversial infectious diseases that are hard to test for (like lyme and mycoplasma), why not go after dx's that are pretty uncontestable? For example, the sinus and bone infections that so many of us have (among others). Insurance companies will pay to treat these diseases indefinitely, once you can get the dx. One, because they can't argue the existence of sinus infections, and two, because osteomyelitis (bone infection) is considered life threatening.It takes work to find doctors who want to be bothered to dx chronic infections and treat appropriately (even longer to find ones willing to do bone biopsies) because not only is it labor intensive, long term treatment is expensive (why do you think lyme docs are under attack?), but once you get one of those kinds of uncontestable dx's, you won't have to worry anymore about your docs being stripped of their licenses or insurance limiting treatment. It's a matter of finding the right doc and the right diagnosis that in the end will get you the testing and treatment you need.Our problem is that we're not choosing our battles wisely. We should be fighting for acknowledgement that chronic illnesses have an infectious basis, period, rather than getting side tracked and obsessed with arguing about one or two infectious diseases that are heavily contested in the medical community. Believe me, the insurance and pharmaceutical companies are happy that we're spending our energy on a losing legal battle over lyme doctors, because that means they can continue to deflect attention from the huge scope of the real problem, which is treatment resistant organisms are the underlying cause of multiple chronic illnesses.If we started getting thousands of patients demanding proper treatment for common chronic infections (and not settling for things like sinus surgery), they'd no longer be able to hide from the truth.penny__________________________________________________

June 15, 2006

I woke up five years ago and realised that the whole medical

community was a sham- you haven't even gotten to first base yet your

convinced you have some hidden, undetectable, impossable to observe,

curled up in the corner type infection?A huge infection by infection

standards is tuberculosis and that doesn't even shake people up, yet

we are debilitated like a malaria sufferer. You have to put the

magnitude of the ilness with COMMONSENSE- tarello gives me a

parasitic smear like malaria and whamo I understand the fatigue,

arthritis and the umpteenth other symptoms. should I ignore the

sinus cocci adhering to my red cells?Which by the way if occupying

10 to 20 percent of your red cells will count in the billions.

Should I ignore the half a dozen blood culture positives of these

organisms that I have played with myself?A massive ilness with a

massive bacterial population is the only way I know to put this

picture together and it's not even the massive numbers of bacteria

yet there TOOLS OF DESTRUCTION that I'm looking at. I don't get a

persons staph epi and say u have a problem- I want to observe this

particular staph epi's TOOLS OF DESTRUCTION.

You really can't see that having something that's become 'REACTIVE'

due to antibiotic resistance genes- can harm you.

>

> <pennyhoule@> wrote in part:

>

> > If you do have a sinus infection, as so many of us do, then the

> trick is to get the doctor to test the organisms that are there,

> which under normal conditions could actually be " normal " but can

also

> be pathogenic. Test what drugs they're sensitive too, tx with abx,

> and if you feel better, it's pretty obvious that i's a problem

bug.

>

> I would only conclude that if I responded to multiple of the drugs

> its sensitive to, and didnt respond to multiple of the drugs its

not

> sensitive to. The presence of X at the site of symptoms doesnt

prove

> that X is the cause. And the chances that X is sensitive to any

given

> abx are pretty high, so its not something I'd draw strong

conclusions

> from.

>

> Look at crohns. Even tho theres no proof and other scenarios are

> conceivable, we probably all agree that most cases are probably

> caused by invasive bacterial infection. But you wouldnt recover an

> expected organism like Lactobacillus from a stool sample and

conclude

> that its the cause of crohns on account of it being sensitive to

the

> abx that have been so effective in crohns. Nor recover an expected

> organism like propionibacteria from the surface of psoriasis and

> determine they cause the psoriasis. I dont know if the nose or

> sinuses have as much bacterial growth as the GI or skin, but they

are

> next to the mouth, which is a septic area with more bugs than you

can

> shake a stick at.

>

> Which is not to say staph or pseudos dont cause symptoms - its

just

> that I dont see why you conclude that they almost certainly do.

>

June 15, 2006

> You have to put the

> magnitude of the ilness with COMMONSENSE- tarello gives me a

> parasitic smear like malaria and whamo I understand the fatigue,

> arthritis and the umpteenth other symptoms. should I ignore the

> sinus cocci adhering to my red cells?Which by the way if occupying

> 10 to 20 percent of your red cells will count in the billions.

Those cocci are definitely a huge possibility, and I agree that their

great abundance strongly implies pathogenicity. But you say you

personally have only observed them in yourself. How did Tarello show

they (his and his wifes bugs) were staph? He didnt. He cultured staph

(or was it a micrococcus) from his & his wifes blood (with only one or

two negative controls), which doesnt prove that those abundant RBC

cocci are anything in particular. As far as I know they could be

literally anything. Heres the only large human series by Tarello I know

of, reported by A here:

http://www.lymediseaseaction.org.uk/conference/t_2004_7.htm

" But anyway, I got Walter (Torello) to look at 78 peripheral blood

stains of my CDC defined CFS and ME patients. He came back and said 52

have got micrococci (either alone or as a co-infection), 33 have got

Babesia-like bodies, 10 have Ehrlichia, 1 Bartonella and 9 were

negative. So it sounds like a zoonotic infection really. The only thing

is that Babesia is puzzling. I only see 10% co-infected with Babesia in

the UK (by Bowen testing). And Borrelia looks like Babesia on a stained

film, so it's difficult to say which one it is. "

While it may be an issue of the quality of the reproduction, not all of

Tarellos smear pictures of cocci look as clear to me as his pictures of

his and his wifes blood. For example:

http://www.cfsresearch.org/cfs/tarello/3.pdf

> Should I ignore the half a dozen blood culture positives of these

> organisms that I have played with myself?

Did you have any negative controls? They should be done pretty much

every time or theres no telling what might have created an artifactual

result.

Did you have to use a CO2 atmosphere to grow them as Tarello did?

I'm not saying this work isnt the thing to do. If I ruled NIH, the

check would be in the mail to the Tarello lab right now.

Also, in my prior post I was mainly talking about the nose. That

abstract I posted said 1/3 of people in the US have SA in the nose.

Blood is another matter and blood cultures, if negative controls are

performed, are much more attention-getting for me.

June 15, 2006

she was taking about 1.5g per day. plus she was sucking them not

swallowing them. for 6 weeks. we last went to spain about 6 months ago

and bought abx (zitr). thats all I can say. No trouble at all. I have

heard about, this law but its not inforced it if you ask me. Plus I

know others who are also still buying there.

On 15 Jun 2006, at 20:31, Nelly Pointis wrote:

> Bleu,

> Â

> I thought one could no longer buy abx without a script in Spain. They

> passed a law about 18mths ago I think. How are you still buying your

> abx there?

> Â

> Do you remember what dose pristinamycine your GF was on? I am taking

> 3g/day and I weigh about 70 kg (I'm tall).

> Â

> Yes, after rxing abx as if they were lollies for decades in France,

> they are now refusing to rx them when they are absolutely needed.

> Â

> My ID prof here in Paris is still battling a very lone battle, going

> to highly respected to ridiculed by his peers for taking chronic

> bacterial infections seriously. He has to keep a fairly low profile

> and not rock the board too hard, or he'll be shot down in flames. The

> way he describes what he has to do is a bit like being in an

> underground resistance organisation, you have to be really careful if

> you want to remain useful.

> Â

> One of the problemsÂ he has a lot of problems with is getting good

> testing performed.

> Â

> Nelly

> Â

>> RE: [infections] Re: Looking for THINKERS

>>>> and I know you are here

>>>>

>>>> Hi Penny,

>>>> I don't know how many times, by how many doctors now, have told me

>>>> that we all have staph in our nasal cavity and my staph germsÂ are

>>>> nothing to worry about even though I have facial pain most of the

>>>> time. Each time I point out that I have antibiotic resistant staph

>>>> that is abundantly colonized and still no desire to treat.Then I

>>>> demand that they do a culture and they end up saying each

>>>> time... " Good news, nothing grew " What am I supposed to do next?

>>>> Take their hand and have them write the prescription anyway? I have

>>>> also asked about pseudomonas with infectious disease doctors. The

>>>> response is the same. We all carry them around for years without

>>>> any problems. " Why are you so paranoid? " is the common response.

>>>> Again what are we supposed to do? If we scream and yell I can tell

>>>> you we are going to end up on the bipolar list.

>>>> Â

>>>> We need to network as a group and put together a page with

>>>> different doctors we have used who take our infections seriously. I

>>>> was told on Monday that I'm colonized with mold. Why did it take

>>>> two years of going to numerous doctors including mold specialist

>>>> before I was told this and given an antifungal?

>>>> Â

>>>> One way to demand service is to refuse to pay co pays. I do have a

>>>> lymph node that needs to be biopsied. I had an ultrasound done by a

>>>> competent person stating " enlarged lymph node " then I went to the

>>>> hospital to have a needle biopsy and the guy says it's not a lymph

>>>> node and won't do the procedure. What then? Scream at him? So I got

>>>> the bill and I called the hospital and refused to pay it stating I

>>>> didn't ask for a second opinion ....I wanted a biopsy! She said she

>>>> would investigate. Then I got a bill stating I still owed the

>>>> copay. I wrote a letter saying I refuse to pay for treatment I

>>>> didn't receive and furthermore I hope there are no severe

>>>> consequences in delaying this treatment while I look for another

>>>> hospital that can follow directions of the surgeon. I believe we

>>>> are going to have to unite in this way because things aren't really

>>>> going to change for us with the screaming ....IMO

>>>> Christi

>>>>

>>>> Penny Houle <pennyhoule@...> wrote:

>>>>> Yes, I know. That's why I try to encourage people to look for any

>>>>> obvious infections they may have. IÂ read the forums and people are

>>>>> continuously complaining about all kinds of chronic infections,

>>>>> sinus, dental, upper respiratory, urinary, lymph nodes, you name

>>>>> it, but nobody ever gets insistent with their docs about testing

>>>>> and treating. They think it's a side issue. If people would

>>>>> throwÂ fits about getting theseÂ obvious infectionsÂ dx'd correctly,

>>>>> they might then have a chance to get better and more serious care.

>>>>> I've posted what feels like thousands of times that pseudomonas,

>>>>> streps, staphs, actinomyces are all well known & Â destructive

>>>>> organisms and almost no one bothers to worry about them or demand

>>>>> to get tested or treatedÂ for them. :-(

>>>>> Â

>>>>> When I first started believing I might be suffering from a chronic

>>>>> infection, the only evidence I had of any infectionÂ was a crown

>>>>> that many years before had been infected, and the fact that I

>>>>> occasionally felt a little pressure in that tooth. Turns out what

>>>>> seemed okay on the outside, was anything but. Same with my

>>>>> sinuses. No obvious signs but when my jaws wereÂ scanned, lo and

>>>>> behold, some seriously infected sinuses that had been that way for

>>>>> years & years.

>>>>> Â

>>>>> My insurance company cannot deny treatment of my sinuses. They

>>>>> could have easily denied treatment of my jaw if it had been dx'd

>>>>> as a " mere " dental problem, but when biopsies showed the bone was

>>>>> infected (osteomyelitis) they could no longer deny any care,

>>>>> includingÂ hyperbaric oxygen, i.v. antibiotics, home nursing, etc.Â

>>>>> Â

>>>>> penny

>>>>>

>>>>> a Carnes <pj7@...> wrote:

>>>>>> Penny,

>>>>>> I am all for getting whatever diagnosis of infection will work.

>>>>>> The situation is only getting worse. My original diagnosis was

>>>>>> for mycoplasma. My insurance was Blue Cross. It covered massive

>>>>>> doses of antibiotics for years with no questions asked. Now Dr.

>>>>>> Joe Jemsek is on trial today in North Carolina for treating Lyme

>>>>>> in the southeast with high dose and longterm antibiotics. Blue

>>>>>> Cross in NC has refused to cover longterm antibiotics for Lyme.

>>>>>> My policy is with South Carolina. Will this new policy cross

>>>>>> state lines as the ticks do?

>>>>>> I never had any evidence of bone or dental infections. I

>>>>>> certainly have none at this point. Originally my insurance did

>>>>>> whatever any doctor suggested. Now some nurse at the insurance

>>>>>> company diagnoses me sight unseen, something which Dr. got

>>>>>> in big trouble for and is currently on trial â€“ gave a

>>>>>> prescription over the phone and then saw the patient a few days

>>>>>> later. Unlike aspirin this is a no no.

>>>>>> I think we may have to all move to Chine to get any drugs at all.

>>>>>> a

>>>>>> What would be simplerÂ for everyone isÂ if people would attempt to

>>>>>> get dx'd for infectious diseases that are acknowledged by

>>>>>> medicine and paid for by insurance. Instead of focusing all our

>>>>>> efforts on controversial infectious diseases that are hard to

>>>>>> test for (like lyme and mycoplasma), why not go after dx's that

>>>>>> are pretty uncontestable?Â For example, theÂ sinus and bone

>>>>>> infections that so many of us have (among others). Insurance

>>>>>> companies will pay to treat these diseasesÂ indefinitely, once you

>>>>>> can get the dx. One, because they can't argue the existence of

>>>>>> sinus infections, and two, because osteomyelitis (bone infection)

>>>>>> is considered life threatening.

>>>>>> It takes workÂ to find doctors whoÂ want toÂ be botheredÂ to

>>>>>> dxÂ chronicÂ infections and treat appropriately (evenÂ longer to

>>>>>> find ones willingÂ toÂ do bone biopsies) because not only is it

>>>>>> labor intensive, long term treatment is expensive (why do you

>>>>>> think lyme docs are under attack?),Â but once you get one ofÂ those

>>>>>> kinds ofÂ uncontestable dx's, you won't have to worry anymore

>>>>>> about your docs being stripped of their licensesÂ or insurance

>>>>>> limiting treatment. It's a matter of finding the right doc and

>>>>>> the right diagnosis that in the end will get you the testing and

>>>>>> treatment you need.

>>>>>> Our problem is that we're not choosing our battles wisely. We

>>>>>> should be fighting for acknowledgement that chronic illnesses

>>>>>> have an infectious basis, period, rather than getting side

>>>>>> tracked and obsessed with arguing about one or two infectious

>>>>>> diseases that are heavily contested in the medical community.

>>>>>> Believe me, the insurance and pharmaceutical companies are happy

>>>>>> that we're spending our energy on a losingÂ legal battle over lyme

>>>>>> doctors, because that means they can continue to deflect

>>>>>> attention from the huge scope of the realÂ problem, which is

>>>>>> treatment resistant organisms are the underlying cause of

>>>>>> multiple chronic illnesses.

>>>>>> If we started getting thousands ofÂ patientsÂ demanding

>>>>>> properÂ treatmentÂ forÂ common chronicÂ infections (and not settling

>>>>>> for things like sinus surgery), they'd no longer be able toÂ hide

>>>>>> fromÂ the truth.

>>>>>> penny

>>>>

>>>> __________________________________________________

>>>>

June 15, 2006

Thanks for the reply tony,

Well, I am trying to have a good report with the dr.

He is an ENT so he is doing the surgery as well. When

I first went to him last fall I told him I wasn't

interested in surgery I just wanted the infection

cleared. He sucked stuff out in the offcice a couple

of times and had it cultured.It came back positive for

Psuedomonas that was resistant to everything I had

tried. I had tried a couple of rounds of biaxin and

Ketek with from the Rhuemey. The acute phase cleared

somewhat. I had been very ill with bloody sinuses for

several weeks. That is why I even went to an ENT,

cause those meds hadn't cleared it completey and was

still having headaches. ENT gave me an Rx for

Trobramycin nebulized. All that did was dry my sinuses

and make them bleed.

So he told me the next steps were IV antibiotics or

surgery.

We discussed it and I asked him which he would

recommened. He said he didn't really want to do either

as both carried risks. He talked about the Ethmoid

being close to the brain and they are infected

according to the CAT Scan. Finally he said he thought

it would be best to do the surgery first so he could

get deep inside and culture to see what is growing

there. This was his recommedation because he said he

could do the IV antibiotic and they still wouldn't be

the right antibiotic.

So I am really trying to have a relationship that will

give me the best results. He also knows I am taking

meds for Cpn and have a dx of CFS. I told him that

because of all of this I really needed to get the

sinuses cleared of infection to give my immune system

a break. I also told him I am concerned about bone

infection as I can feel blisters on the roof of my

mouth. Also that about every 2-3 weeks the gunk in the

back of my neck increases and I get a fever and get

really sick. At times it goes into my lungs and

exaserbates my asthma.

How am I doing, What else should I say. I don't have

another appointment with him. Going straight to

surgery now. Should I set up an office visit and talk

to him more. I really really appreciate your advice.

Marie

How am I doing?

> Marie

> You MUST ESTABLISH a STRONG PRIORITY with your

> doctor that his lab

> reports everything- I have been sent over 100 swabs

> and never ever

> do I grow NADA...Unfortunately the labs and doctors

> are so far

> appart in medicine that conditions like these are

> allowed to

> flourish.

> If you had a microbiologist observing the fascial

> destruction of

> these organisms these conditions wouldn't last a

> month.Also you have

> a surgeon and a doctor has no idea what the surgeon

> is seeing- so

> your stuck.But the good news is that if you do your

> homework and

> take some control of what is going to happen your

> outcome can be

> alot better.BAsically don't sit in the docs office

> like a wood duck,

> these people are spoiled lazy asses and if you don't

> develop and use

> a GREAT STRATEGY....stuck again.

> I have friends that work wonderfully with there

> doctors and I see

> cases of people that sit in front of doctors 33

> times a year and

> just go thru the motions(such a waste).

> Often you really don't have a caring doctor- I would

> also complain

> like-I have alot of pressure on my left cheek that

> seems to radiate

> to my left hip.. I don't care what you think but for

> me this is

> disseminating from my sinus region and I need it

> taken care of

> appropriately not half assed.

>

> > > But what has to be in your sinus for

> it to

> > > be considered a pathogen,

> > > assuming you dont have sinus or upper

> respiratory

> > > symptoms?

> > >

> > > Isnt there a flora up there thats supposed to be

> > > there? What finding

> > > would we be after?

> > >

> > > With bone I guess its much simpler as theres not

> > > believed to be a

> > > commensal flora there.

> > >

> > > > What would be simpler for everyone is if

> people

> > > would attempt to

> > > get dx'd

> > > > for infectious diseases that are acknowledged

> by

> > > medicine and paid

> > > for by

> > > > insurance. Instead of focusing all our efforts

> on

> > > controversial

> > > infectious

> > > > diseases that are hard to test for (like lyme

> and

> > > mycoplasma), why

> > > not go

> > > > after dx's that are pretty uncontestable? For

> > > example, the sinus

> > > and bone

> > > > infections that so many of us have (among

> others).

> > > Insurance

> > > companies will

> > > > pay to treat these diseases indefinitely, once

> you

> > > can get the dx.

> > > One,

> > > > because they can't argue the existence of

> sinus

> > > infections, and

> > > two, because

> > > > osteomyelitis (bone infection) is considered

> life

> > > threatening.

> > >

> >

> > __________________________________________________

> >

June 15, 2006

'

The guy works with fatigued pets and a humugous amount are staph

species(multiple colonisation often)- a microccus is the species

that staph neg and positive coagulators belong to.There's an

overwhelming amount of micrococcus in his studies and of course the

bacterial zoo that comes to town should not be overlooked.

The thing I find with people that tarello can't find the cocci on

are the ones that have candida and pseudonomas dominating the

samples ..Whne you have pseudonamas often cocci can't grow alongside

and candida are just cocci that have been twisted genetically they

grow 50 times larger, gram stain similar and the colonies look

exactly like staph epidermis.

Your still failing to accept that humungous ilness isn't caused by

three bugs- We are talking all the hallmarks of a malarial type

ilness that you can't get your head around.You know disseminated

infections read like fibro/cfs not localised infections of the

genitals or skin or whatever part of the anatomy can host minor

ailments.You gotta stop reading the fiction that people have

produced and haven't equated to actual health imptrovements of

anyone we can contact on the phone.I was like you 5 years earlier

but I just got smart and started questioning the roles everyone

plays in this mess of ilnesses and found outside of tarello they all

fell short and most just short of a scam.

tony

>

> > You have to put the

> > magnitude of the ilness with COMMONSENSE- tarello gives me a

> > parasitic smear like malaria and whamo I understand the fatigue,

> > arthritis and the umpteenth other symptoms. should I ignore the

> > sinus cocci adhering to my red cells?Which by the way if

occupying

> > 10 to 20 percent of your red cells will count in the billions.

>

> Those cocci are definitely a huge possibility, and I agree that

their

> great abundance strongly implies pathogenicity. But you say you

> personally have only observed them in yourself. How did Tarello

show

> they (his and his wifes bugs) were staph? He didnt. He cultured

staph

> (or was it a micrococcus) from his & his wifes blood (with only

one or

> two negative controls), which doesnt prove that those abundant RBC

> cocci are anything in particular. As far as I know they could be

> literally anything. Heres the only large human series by Tarello I

know

> of, reported by A here:

>

> http://www.lymediseaseaction.org.uk/conference/t_2004_7.htm

>

> " But anyway, I got Walter (Torello) to look at 78 peripheral blood

> stains of my CDC defined CFS and ME patients. He came back and

said 52

> have got micrococci (either alone or as a co-infection), 33 have

got

> Babesia-like bodies, 10 have Ehrlichia, 1 Bartonella and 9 were

> negative. So it sounds like a zoonotic infection really. The only

thing

> is that Babesia is puzzling. I only see 10% co-infected with

Babesia in

> the UK (by Bowen testing). And Borrelia looks like Babesia on a

stained

> film, so it's difficult to say which one it is. "

>

> While it may be an issue of the quality of the reproduction, not

all of

> Tarellos smear pictures of cocci look as clear to me as his

pictures of

> his and his wifes blood. For example:

>

> http://www.cfsresearch.org/cfs/tarello/3.pdf

>

> > Should I ignore the half a dozen blood culture positives of

these

> > organisms that I have played with myself?

>

> Did you have any negative controls? They should be done pretty

much

> every time or theres no telling what might have created an

artifactual

> result.

>

> Did you have to use a CO2 atmosphere to grow them as Tarello did?

>

> I'm not saying this work isnt the thing to do. If I ruled NIH, the

> check would be in the mail to the Tarello lab right now.

>

> Also, in my prior post I was mainly talking about the nose. That

> abstract I posted said 1/3 of people in the US have SA in the

nose.

> Blood is another matter and blood cultures, if negative controls

are

> performed, are much more attention-getting for me.

>

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