RE: MSRA positive, opportunitistic pathogens, idiotic ID docs and what do we do

[Guest guest]

I am MSRA positive consistently in every culture

taken for past 4 years including c-sec incision, numerous central lines and other

incisions for example to repair a pneumothorax and in nasal, eye, and

respiratory cultures. I am resistant to most every antibiotic now. At this

moment, I am now starting my 7th week on Bactrobahn nasal irrigation

to clear some of this.

At my last hospitalization due to gram

negative staph and other infection of my inborne catheter removed during my

hospital stay, I was given vancomycin for 5 days. I still test gram negative

and doctors simply don’t care. I will spike a fever of 102-103 every 2

weeks or so, start coughing up putrid color stuff and then fever dies down and

I at least on the surface appear to be better. Infectious disease docs seem

unconcerned except to label my room when I am hospitalized due to exacerbations

of diagnosed multiple sclerosis and so forth.

I saw your post and I am allergic to penicillin

not to mention my staph cultures demonstrate being resistant to penicillin,

methicillin and others. I am also diagnosed with fibromyalgia and an unusual autoimmune

disorder known as Behcet’s which is believed to have turned into Neuro-Behcet’s

along with the progressive relapsing form of Multiple Sclerosis. I believe this

all stems from viral and inflammatory problems which began in my childhood.

I assume I acquired the MRSA during my

c-section in 2001 but I do not known exactly. It was not mentioned until that

time.

From:

infections

[mailto:infections ] On Behalf Of dumbaussie2000

Sent: Wednesday, May 10, 2006 2:45

AM

To:

infections

Subject:

[infections] Re: asks for help

KAte

Pseudonomads is a gram negative that's highly resistant and almost

alway's culturable in the autoimmune groups.I like the idea of

getting into darkfioeld and looking at your blood if you wanna go

the serious route of lyme diagnosis and treatment, BUT don't be

surprised that if your blood is no longer swirming you still maybe

sick to the OPPURTUNISTIC PATHOGENS that bought there time to get

there pound of your flesh.

KAte the vanco is more a 'probe drug for paul's sake', it won't last

a week used by an IDIOTIC ID doc because it clearly shows you in the

instruction sheet to never use it on it's own against staph species.

It actually teams it up with another couple of big hitters in the

case of sinus bugs.I would add the high dose penicillin immediately

to try and get the person well enough before the drug turned.It's

also the kind of tough drug that an ill body needs to clean out some

of the hard to get into area's.

trony

>

> No Tony, I don't think I misunderstood exactly. I was a little

down

> (feeling negative) and also still trying to figure out a best-

guess

> treatment scenario when I can't figure out how to get anything

> cultured. I have the Lyme diagnosis you don't like. I have access

to

> things like Biaxin, Ketek, the cyclines, and Tinidizole or

Flagyl.

> Nobody is going to give me Vancomycin, although I know one person

who

> got it out of a Lyme doc and I know which doc it is . I can maybe

> talk my way into a penicillin or cephalosporin, although I'm

guessing

> my current prescribing doc may not like them since he is into the

> cyst theory. Some of those latter drugs can be otherwise

obtained....

>

> You told agent scha that all the many drugs he's taken wouldn't

have

> killed off a serious bacterial infection. So what you said here

about

> Rocephin is the kind of helpful explanatory comment I am looking

for

> from you in trying to avoid mistakes :

>

> > The docs that treat serious bone infection NEVER EVER

> > use this drug.I actually told people on NUMEROUS OCCASIONS TRY A

> > FIRST GENERATION (10 times cheaper) cephalasporin for a couple

of

> > days CEFAZOLIN- CEFAZOLIN- CEFAZOLIN...

>

> But I do understand that there may be reasons that Rocephin helps

> chronic neuro-lyme symptoms that may not have to do with its

> antibiotic properties.

>

> I just checked Burrascano's Lyme guidlines and he says first

> generation cephalasporins aren't effective in Lyme and third

> generation are the best because of the low MBCs. So who knows? He

> also says amoxicillan is more effective than oral pen V for gram

> negatives like Lyme. I guess you are talking about gram positives

all

> the time though.

>

> - Kate

>

[Guest guest]

You are a classic example of what is wrong with ID doctors. You have

all these symptoms and they want to tag you with a label and then

there's NO TREATMENT because no-one knows the cause or effect.

> >

> > No Tony, I don't think I misunderstood exactly.

> I was a little

> down

> > (feeling negative) and also still trying to

> figure out a best-

> guess

> > treatment scenario when I can't figure out how

> to get anything

> > cultured. I have the Lyme diagnosis you don't

> like. I have access

> to

> > things like Biaxin, Ketek, the cyclines, and

> Tinidizole or

> Flagyl.

> > Nobody is going to give me Vancomycin, although

> I know one person

> who

> > got it out of a Lyme doc and I know which doc it

> is . I can maybe

> > talk my way into a penicillin or cephalosporin,

> although I'm

> guessing

> > my current prescribing doc may not like them

> since he is into the

> > cyst theory. Some of those latter drugs can be

> otherwise

> obtained....

> >

> > You told agent scha that all the many drugs he's

> taken wouldn't

> have

> > killed off a serious bacterial infection. So

> what you said here

> about

> > Rocephin is the kind of helpful explanatory

> comment I am looking

> for

> > from you in trying to avoid mistakes :

> >

> > > The docs that treat serious bone infection

> NEVER EVER

> > > use this drug.I actually told people on

> NUMEROUS OCCASIONS TRY A

> > > FIRST GENERATION (10 times cheaper)

> cephalasporin for a couple

> of

> > > days CEFAZOLIN- CEFAZOLIN- CEFAZOLIN...

> >

> > But I do understand that there may be reasons

> that Rocephin helps

> > chronic neuro-lyme symptoms that may not have to

> do with its

> > antibiotic properties.

> >

> > I just checked Burrascano's Lyme guidlines and

> he says first

> > generation cephalasporins aren't effective in

> Lyme and third

> > generation are the best because of the low MBCs.

> So who knows? He

> > also says amoxicillan is more effective than

> oral pen V for gram

> > negatives like Lyme. I guess you are talking

> about gram positives

> all

> > the time though.

> >

> > - Kate

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

My natural thinking ENT (former DAN! Doc too)

did separately grow out some respiratory and nasal cultures looking for fungus

and nothing grew out after 4-6 weeks of several different cultures he did along

with sending them to a regular lab.

So what do I do….it is now ravaging

my lungs this week……

From: infections [mailto:infections ] On Behalf Of dumbaussie2000

Sent: Wednesday, May 10, 2006 4:42

PM

infections

Subject:

[infections] Re: MSRA positive, opportunitistic pathogens,

idiotic ID docs and what do we do

You are a classic example of what is wrong with ID doctors. You have

all these symptoms and they want to tag you with a label and then

there's NO TREATMENT because no-one knows the cause or effect.

> >

> > No Tony, I don't think I misunderstood exactly.

> I was a little

> down

> > (feeling negative) and also still trying to

> figure out a best-

> guess

> > treatment scenario when I can't figure out how

> to get anything

> > cultured. I have the Lyme diagnosis you don't

> like. I have access

> to

> > things like Biaxin, Ketek, the cyclines, and

> Tinidizole or

> Flagyl.

> > Nobody is going to give me Vancomycin, although

> I know one person

> who

> > got it out of a Lyme doc and I know which doc it

> is . I can maybe

> > talk my way into a penicillin or cephalosporin,

> although I'm

> guessing

> > my current prescribing doc may not like them

> since he is into the

> > cyst theory. Some of those latter drugs can be

> otherwise

> obtained....

> >

> > You told agent scha that all the many drugs he's

> taken wouldn't

> have

> > killed off a serious bacterial infection. So

> what you said here

> about

> > Rocephin is the kind of helpful explanatory

> comment I am looking

> for

> > from you in trying to avoid mistakes :

> >

> > > The docs that treat serious bone infection

> NEVER EVER

> > > use this drug.I actually told people on

> NUMEROUS OCCASIONS TRY A

> > > FIRST GENERATION (10 times cheaper)

> cephalasporin for a couple

> of

> > > days CEFAZOLIN- CEFAZOLIN- CEFAZOLIN...

> >

> > But I do understand that there may be reasons

> that Rocephin helps

> > chronic neuro-lyme symptoms that may not have to

> do with its

> > antibiotic properties.

> >

> > I just checked Burrascano's Lyme guidlines and

> he says first

> > generation cephalasporins aren't effective in

> Lyme and third

> > generation are the best because of the low MBCs.

> So who knows? He

> > also says amoxicillan is more effective than

> oral pen V for gram

> > negatives like Lyme. I guess you are talking

> about gram positives

> all

> > the time though.

> >

> > - Kate

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

I have had many tests come back like this, and yet after time and

testing with probes found the problem was actually what the tests

claimed it wasn't. I give you an example. I took cipro for about 6

weeks, (6 week cycles are important if you ask me) and after I had one

lot of symptoms clear, then a few weeks later a new set arrived. Colon

based, loose stools. The DR did test for c-dificil and found nothing

wrong, thus I went 6 months with a campylobacteria infection that I

found via a private lab. This nearly killed me and I cured it with

cipro, all the while I had it in the house and was under the false

assumption that it was the cipro that had caused the problem. Which in

a sense it was, as one is prone to such infections after abx such as

cipro. Hindsight is such a wonderful thing. Be careful if you ask me of

'nothing found'.

On 11 May 2006, at 19:50, julie levitt wrote:

> My natural thinking ENT (former DAN! Doc too) did separately grow out

> some respiratory and nasal cultures looking for fungus and nothing

> grew out after 4-6 weeks of several different cultures he did along

> with sending them to a regular lab.

> So what do I do….it is now ravaging my lungs this week……