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Marie

You know your doctor best and you really must practise what you need

from him, so you go in there PREPARED TO WIN.You know doctors don't

read anything you take in so don't go there- I actually learned to

show my doctor 2 important lines of info and that was it I knew no

more was going to come from it. I think Nelly hit it on the head

when she went in with her husband and if possable husbands should

show major concern and exagerate if need be.

Just another thought you should go check out sinus news on the net

and place a couple of people's expoeriences in front of your doctor

where they got fatigue after there sinus infection developed-

Basically normally functioning humans working nicely, then the sinus

and fatigue and whamo ...But keep it down to 20 or 30 words for your

doctor .

> > > > 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.

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > > __________________________________________________

> > >

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> I think Nelly hit it on the head >when she went in with her husband and if possable husbands should >show major concern and exagerate if need be.

Should the doctor and the patients be in Lonsdale Str for this husband-throwing-arms-up-and crying-out-loud strategy to work?;))

This latest quack is Vietnamese, very keen to be a very good, French doctor, so I think I need to find someone who feels real powerful (not scared for his fragile career, not scared of what his peers think of him etc. ) PLUS, s/he's got to be a seeker of truth (usually studying medicine knocked all this out of people early on during their med school years)

As soon as I am back vertical, I'll be doing some serious doctor interviewing around my area.

Nelly

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

MarieYou know your doctor best and you really must practise what you need from him, so you go in there PREPARED TO WIN.You know doctors don't read anything you take in so don't go there- I actually learned to show my doctor 2 important lines of info and that was it I knew no more was going to come from it. I think Nelly hit it on the head when she went in with her husband and if possable husbands should show major concern and exagerate if need be.Just another thought you should go check out sinus news on the net and place a couple of people's expoeriences in front of your doctor where they got fatigue after there sinus infection developed- Basically normally functioning humans working nicely, then the sinus and fatigue and whamo ...But keep it down to 20 or 30 words for your doctor .> > > > 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. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________> > >

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I think Tony is right about doctors not reading the articles one brings in on the spot but I've been experimenting with other strategies lately. I don't have a husband to bring in to the appt. so I'm trying to think creatively. I recently copied two articles about HHV-6 and CFS. I brought them to my gyno. during the early morning before the crowds lined her office and asked to speak to the nurse. I explained that I would like to have the bloodwork for this done. I asked her to speak to the doctor and I would follow up in two days. I called first and asked if the doctor had read the articles. The nurse said she had read the articles, researched the lab for me,and would draw my blood that day. I went in the afternoon and the doctor was actually commenting that this was interesting research and it would be wonderful if the drugs mentioned could actually help with CFS. I got the bloodwork I requested but it took time to make it happen. Just another strategy to

consider...(especially for those of you without a mate Christidumbaussie2000 <dumbaussie2000@...> wrote: MarieYou know your doctor best and you really must practise what you need from him, so you go in there PREPARED TO WIN.You know doctors don't read anything you take in so don't go there- I actually learned to show my doctor 2 important lines of info and that was it I knew no more was going to come from it. I think Nelly hit it on the head when she went in with her husband and if possable husbands should show major

concern and exagerate if need be.Just another thought you should go check out sinus news on the net and place a couple of people's expoeriences in front of your doctor where they got fatigue after there sinus infection developed- Basically normally functioning humans working nicely, then the sinus and fatigue and whamo ...But keep it down to 20 or 30 words for your doctor .> > > > 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. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________>

> >

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Exactly, Nelly! And this mistreatment is only going to escalate until we put our collective foot down. No doctor can really claim that it is unreasonable to demand tests for obvious infections, so when we've got an obvious infection, we have to do what Nelly did. Not let them pull a fast one while we're too busy dying. Doctors will often say, "you've got a sinus infection, or you've got a dental infection, or you've got an ear infection". And then they try to get away with throwing some generic abx at you...never testing, identifying or treating correctly. This is actually our leverage, to demand adequate tests when we've been told we've got "an infection", or when it's obvious we've got an infection. Once we get the test results back, they can't refuse treatment & insurance companies can't refuse payment. And when a doctor sees you improving, he may get more on board with your case &

continue treating you (this was certainly the case with me and some of my friends). This is why we have to encourage people to focus way more energy on demanding better testing for these simple infections that there's no controversy about their existence in the first place. And the next time doctors tell you that we are misusing antibiotics, throw it right back at them that THEY are misusing antibiotics by not testing our organisms to prescribe the correct ones! At least it's a start. We have to start somewhere if they're ever going to wake up to all the illness that's being caused by infectious organisms. pennyNelly Pointis <janel@...> 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. 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 __________________________________________________

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I "conclude that staph and pseudomonas are commonly the cause of sinus infections" based on the reams of medical documentation to back it up. Various strains of these two organisms are overwhelmingly implicated in sinus infections. My ENT knows this and says ALL ENTs know this. They just prefer the knife. The knife buys them nice cars and boats. Treating correctly just feeds the pharmaceutical companies. It doesn't matter if some people test negative for these bugs. What matters is that we start getting tested at all. A lot more will test positive than negative and it will encourage better understanding and treatment. If everyone treated sinus infections the way my ENT does, there would be a huge change. Probably it's the ripple effect that docs are scared of. Surgey provides them with a very nice way of life. That's probably why my ENT has a nice but modest office and the uptown guys have marble waiting rooms. penny <usenethod@...> wrote: <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.

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Bravo, Bleu. It's the same thing here. Ads, articles in every doc's waiting room admonishing us not to "misuse abx". Who are they kidding? WHO is misusing abx? Doctors who won't identify your organism before prescribing a drug to kill it. This is what we have to get the word out on. Don't tell me I have an infection, without telling me what exactly it is, and what are my best chances of killing it for good? pennyColourbleu <colourbleu@...> wrote: 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.bleuOn 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.>

 > 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).> 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!>  > 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.>> 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 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 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>>>>>>> __________________________________________________>> Do You

?>> Tired of spam? has the best spam protection around>> http://mail.> >

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It's true that 1/3, maybe more people have staph in the nose. But it's pathogenic in some people, commonly in those with sinus infections. Unfortunately, it's the rationalization that so many people have it, that's preventing the people who are actually sick to be taken seriously. Because most people aren't sick is a poor way to rule out an individual diagnosis. penny <usenethod@...> wrote: > 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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It's weird. I've usually felt that the European docs I

meet are more open minded. But I suppose most docs

have to share similar traits to make it through med

school. Which means it's all about learning the facts

(med school is like the military), detaching from the

patients, and avoiding looking crazy to your teachers

and superiors at all costs, if you want to make it.

99% of the ones who do make it have had all

originality brainwashed out of them.

penny

--- Nelly Pointis <janel@...> wrote:

> > I think Nelly hit it on the head

> >when she went in with her husband and if possable

> husbands should

> >show major concern and exagerate if need be.

>

> Should the doctor and the patients be in Lonsdale

> Str for this husband-throwing-arms-up-and

> crying-out-loud strategy to work?;))

>

> This latest quack is Vietnamese, very keen to be a

> very good, French doctor, so I think I need to find

> someone who feels real powerful (not scared for his

> fragile career, not scared of what his peers think

> of him etc. ) PLUS, s/he's got to be a seeker of

> truth (usually studying medicine knocked all this

> out of people early on during their med school

> years)

>

> As soon as I am back vertical, I'll be doing some

> serious doctor interviewing around my area.

>

> Nelly

> [infections] Re: Looking

> for THINKERS and I know you are here

>

>

> Marie

> You know your doctor best and you really must

> practise what you need

> from him, so you go in there PREPARED TO WIN.You

> know doctors don't

> read anything you take in so don't go there- I

> actually learned to

> show my doctor 2 important lines of info and that

> was it I knew no

> more was going to come from it. I think Nelly hit

> it on the head

> when she went in with her husband and if possable

> husbands should

> show major concern and exagerate if need be.

>

> Just another thought you should go check out sinus

> news on the net

> and place a couple of people's expoeriences in

> front of your doctor

> where they got fatigue after there sinus infection

> developed-

> Basically normally functioning humans working

> nicely, then the sinus

> and fatigue and whamo ...But keep it down to 20 or

> 30 words for your

> doctor .

>

>

> > > > > 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.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

> __________________________________________________

> > > >

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Smart to work the assistants. They probably like being

more than data collectors.

penny

--- Christi Howarth <salzberglver3@...> wrote:

> I think Tony is right about doctors not reading the

> articles one brings in on the spot but I've been

> experimenting with other strategies lately. I don't

> have a husband to bring in to the appt. so I'm

> trying to think creatively. I recently copied two

> articles about HHV-6 and CFS. I brought them to my

> gyno. during the early morning before the crowds

> lined her office and asked to speak to the nurse. I

> explained that I would like to have the bloodwork

> for this done. I asked her to speak to the doctor

> and I would follow up in two days. I called first

> and asked if the doctor had read the articles. The

> nurse said she had read the articles, researched the

> lab for me,and would draw my blood that day. I went

> in the afternoon and the doctor was actually

> commenting that this was interesting research and it

> would be wonderful if the drugs mentioned could

> actually help with CFS. I got the bloodwork I

> requested but it took time to make it happen. Just

> another strategy to

> consider...(especially for those of you without a

> mate

> Christi

>

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Double edged sword, Penny, as many of us have infections that are very poorly testable so to actually say to doctors "treat me with abx for the infections I test positive for" will result in ...no treatment at all. They will only be too happy not to give us any abx just corticosteroids, painkillers and antidepressants, all kinds of palliative stuff that will kill us faster. Have to be pragmatic, we can't force them to test WELL, and getting badly tested will result in a dead end road with no treatment at all.

Nelly

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>> Christi>>>> Penny Houle 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 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>>>>>>> __________________________________________________>>

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this is my feeling too.

I think that the people that are in the wrong in this latest witch hunt

are the so-called victims who protest that they were harmed by

treatment. If all the friends of people who have been killed as a

result of NO treatment were to come out of the closet then the witch

hunts would be for all the GPs etc. who are quietly pocketing £90K

plus a year for doing shit.

bleu

On 16 Jun 2006, at 11:43, Nelly Pointis wrote:

> Double edged sword, Penny, as many of us have infections that are very

> poorly testable so to actually say to doctors " treat me with abx for

> the infections I test positive for " will result in ...no treatment at

> all. They will only be too happy not to give us any abx just

> corticosteroids, painkillers and antidepressants, all kinds of

> palliative stuff that will kill us faster. Have to be pragmatic, we

> can't force them to test WELL, and getting badly tested will result in

> a dead end road with no treatment at all.

>  

> Nelly

>> 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

>>> >> Christi

>>> >>

>>> >> Penny Houle 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 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

>>> >>>

>>> >>

>>> >> __________________________________________________

>>> >>

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Doctors are totally safe if they turn a blind eye, send you home with a dx of psychosmthng, stress, depression, autoimmune bs, high cholesterol, high BP etc. They are in fact a lot safer if they never look for a cause and "treat" the symptoms only. If it remains in the doctor's best interest to NOT look into causes, we are not going anywhere fast (except straight into the wall). Doctors are not our friends, nor are they truth seekers, they have a career to manage, we are only the raw material they need to have that career and make a living.

Progress in medicine will occur in spite of doctors not through them

Nelly

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

this is my feeling too.I think that the people that are in the wrong in this latest witch hunt are the so-called victims who protest that they were harmed by treatment. If all the friends of people who have been killed as a result of NO treatment were to come out of the closet then the witch hunts would be for all the GPs etc. who are quietly pocketing £90K plus a year for doing shit.bleuOn 16 Jun 2006, at 11:43, Nelly Pointis wrote:

Double edged sword, Penny, as many of us have infections that are very poorly testable so to actually say to doctors "treat me with abx for the infections I test positive for" will result in ...no treatment at all. They will only be too happy not to give us any abx just corticosteroids, painkillers and antidepressants, all kinds of palliative stuff that will kill us faster. Have to be pragmatic, we can't force them to test WELL, and getting badly tested will result in a dead end road with no treatment at all. Nelly

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So the alternative to demanding better testing and

appropriate abx treatment whenever possible is doing

nothing, which has been working for us so well so far.

I seriously can't understand this argument. Except to

ACCEPT that it's not only the doctors who've been

brainwashed.

If I used the same argument to lyme patients that

their infections are too poorly testable, people would

be seriously irate. It's such an inequity that people

get riled up over one or two bugs and ignore all the

rest (just because we've been told to). I can't fathom

it.

penny

--- Nelly Pointis <janel@...> wrote:

> Double edged sword, Penny, as many of us have

> infections that are very poorly testable so to

> actually say to doctors " treat me with abx for the

> infections I test positive for " will result in ...no

> treatment at all. They will only be too happy not to

> give us any abx just corticosteroids, painkillers

> and antidepressants, all kinds of palliative stuff

> that will kill us faster. Have to be pragmatic, we

> can't force them to test WELL, and getting badly

> tested will result in a dead end road with no

> treatment at all.

>

> Nelly

> 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.

> >> 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 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 throw fits

> >>> about getting these 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

> >>> treated for them. :-(

> >>> Â

> >>> 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 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,

> >>> including hyperbaric oxygen, i.v.

> antibiotics, home nursing, etc.Â

> >>> Â

> >>> penny

> >>>

> >>>

> >>> a Carnes 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 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 ofÂ

> patients demanding

> >>>> proper treatment for common chronicÂ

> infections (and not settling

> >>>> for things like sinus surgery), they'd no

> longer be able to hide

> >>>> from the truth.

> >>>> penny

> >>>

> >>

> >>

> __________________________________________________

> >>

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