Re: MRSA status; Re: Anaphylactic shock, Electrolytes, Salt/C, Ampehotericine B, Benicar etc.

[Guest guest]

You ask good questions but will you come

with me to these docs and ask the same question. They look, and shake their

head were the MRSA status. They have no interest in making it “go down”

unless I have an active open lesion like the infected portacat. This has been

my experience to date from every doc I see. It is something they label on my

chart like I have aids and nothing more…..That is the part I still don’t

understand and essentially why I joined the list. Because I want the MRSA issue

addressed now since I think it is stopping me from getting well everywhere else.

The fact that I suddenly developed a rapidly escalating lung infection just

after I joined the list was coincidental.

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

Sent: Sunday, May 14, 2006 8:55 PM

infections

Subject:

[infections] Re: Anaphylactic shock, Electrolytes, Salt/C,

Ampehotericine B, Benicar etc.

just another thought. Why wouldn't any doctor want your MRSA

infection to be going down.Also why wouldn't you want to be on an

upward merri go round instead of the old downward spiralling one

where you go see specialist after specialist with a whole gammit of

CRAP treatments that just don't do anything IMO.I mean you get an

improvement only to stop and start receeding again. I would want to

see you add and add and wouldn't except anything short of full co-

operation from your doctor due to your CLEAR MEDICAL HISTORY..

>

> There's nothing dangerous about doxy for a year

> but there is or may be difficulty in getting a doc

> to RX it for a year..(see my other email)

>

>

>

> _____

>

> From: infections

> [mailto:infections ]

> On Behalf Of dumbaussie2000

> Sent: Sunday, May 14, 2006 6:02 PM

> infections

> Subject: [infections] Re:

> Anaphylactic shock, Electrolytes, Salt/C,

> Ampehotericine B, Benicar etc.

>

>

>

>

> Don't back off the doxy if it is really having a

> major impact. Try

> add a antifungal since most abx don't agree, I

> believe you'll have

> less problems with all drugs when your pathogens

> are being

> quietened.There's nothing dangerous about doing

> doxy for a year.

> tony

>

>

>

> * Visit your group

> " infections

> <InfectionAndInflamm

> ation2> " on the web.

>

> *

[Guest guest]

Yeah, you and me both. Even when we have diagnosed abx resistant bacteria, that knowledge results in no treatment. What is wrong here? I mean seriously? julie levitt <knightshotter@...> wrote: You ask good questions but will you come with me to these docs and ask the same question. They look, and shake their head were the MRSA status. They have no interest in making it “go down” unless I have an active open lesion like the infected portacat. This has been my experience to date from every doc I see. It is something they label on my chart like I have aids and nothing more…..That is the part I still don’t understand and essentially why I joined the list. Because I want the MRSA issue addressed now since I think it is stopping me from getting well everywhere

else. The fact that I suddenly developed a rapidly escalating lung infection just after I joined the list was coincidental.

[Guest guest]

I am in the drivers seat but I can’

write out the prescriptions. Some of my docs are not pro lengthy taking of

antibx so I can drive all I want but just in circles. I don’t have an all

in the head diagnosis luckily. Progressive MS and Neuro-Behcet’s but the

MRSA is ignored; not in the head just igored because they are too busy trying

to eradicate it within the hospital and stop new patients from getting it.

Which docs prescribe it long –term, so I go to the right docs otherwise I

can simply drive in circles till I die….Get it? Do you know how many

docs have “fired me” for being in the driver’s seat and

demanding proper care???

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

Sent: Sunday, May 14, 2006 11:11

PM

infections

Subject: [infections]

MRSA status; Re: Anaphylactic shock, Electrolytes, Salt/C, Ampehotericine B,

Benicar etc.

You have got MRSA- some form of paralysis coming diagnosed as MS,

you've had several positive blood cultures that have by no means

been dealt with due to dissemination. You basically should be

sitting in the drivers seat at doctors appointments you can't be

walking around with the all in your head diagnosis of everyone else.

You actually need to practise way before your appointment date what

you need and how to get it.

> >

> > There's nothing dangerous about doxy for a year

> > but there is or may be difficulty in getting a

> doc

> > to RX it for a year..(see my other email)

> >

> >

> >

> > _____

> >

> > From: infections

> >

> [mailto:infections ]

> > On Behalf Of dumbaussie2000

> > Sent: Sunday, May 14, 2006 6:02 PM

> > infections

> > Subject: [infections] Re:

> > Anaphylactic shock, Electrolytes, Salt/C,

> > Ampehotericine B, Benicar etc.

> >

> >

> >

> >

> > Don't back off the doxy if it is really having a

> > major impact. Try

> > add a antifungal since most abx don't agree, I

> > believe you'll have

> > less problems with all drugs when your pathogens

> > are being

> > quietened.There's nothing dangerous about doing

> > doxy for a year.

> > tony

> >

> >

> >

> > * Visit your group

> > " infections

> >

> <InfectionAndInflamm

> > ation2> " on the web.

> >

> > *

[Guest guest]

Working a doctor? This is a lesson that

many of us still need to learn…Working them without pissing them off and

having them “fire you” . I have a repeat history of being FIRED by

doctors, yes asked to terminate my care there because of claims I was

non-compliant with their decision ; read I wouldn’t let them run their

ship…….

I was initially a candidate for

Novantrone, one of the chemos used for MS. I have some heart irregularity and

liver function levels that meant the doctor wanted to hold off for a year

before deciding to move to Novantrone. I did a number of IVIG trials (IV gamma

gobulin) both in the hospital and in one month boosters but saw some relief

from severe MS symptoms but the results didn’t keep and eventually

insurance declined to pay any further.

I did poorly on the interferons and was

then put back on copaxone and developed further lesions in the next 2 MRIs so I

am off that as well….So done with the CRABs for MS. I am starting week 4

of LDN.

My ENT best meets Tony’s definition

for being a doc who trusts that I know what I am doing and is willing to

prescribe me meds if I can demonstrate the need. He is the one who is doing the

LDN. My neuro and my ENT are very close and the neuro is also open to

discussion . I see him tomorrow.

I did get some antifungals (not long –term)

as you all suggested. BTW, I do have an appt scheduled now but not till July

back with the infectious disease clinic at UNC with a doc with special interest

(she claims) in MRSA…Will be Reviewing her research studies on the

internet now but appt isn’t till July.

From:

infections

[mailto:infections ] On Behalf Of dumbaussie2000

Sent: Monday, May 15, 2006 10:32

AM

To:

infections

Subject: [infections]

MRSA status; Re: Anaphylactic shock, Electrolytes, Salt/C, Ampehotericine B,

Benicar etc.

There is a skill that you have to develop I know a few that work

there doctors really well and get everything they need- again the

alternatives often are uglier than abx so you can play that

card.Chaemo is something they offer the MS patient not frequently

though.

tony

> > >

> > > There's nothing dangerous about doxy for a

> year

> > > but there is or may be difficulty in getting a

> > doc

> > > to RX it for a year..(see my other email)

> > >

> > >

> > >

> > > _____

> > >

> > > From:

> infections

> > >

> >

> [mailto:infections ]

> > > On Behalf Of dumbaussie2000

> > > Sent: Sunday, May 14, 2006 6:02 PM

> > > infections

> > > Subject: [infections] Re:

> > > Anaphylactic shock, Electrolytes, Salt/C,

> > > Ampehotericine B, Benicar etc.

> > >

> > >

> > >

> > >

> > > Don't back off the doxy if it is really having

> a

> > > major impact. Try

> > > add a antifungal since most abx don't agree, I

> > > believe you'll have

> > > less problems with all drugs when your

> pathogens

> > > are being

> > > quietened.There's nothing dangerous about

> doing

> > > doxy for a year.

> > > tony

> > >

> > >

> > >

> > > * Visit your group

> > > " infections

> > >

> >

> <InfectionAndInflamm

> > > ation2> " on the web.

> > >

> > > *

[Guest guest]

here here

spot on, dont take no crap.

bleu

On 15 May 2006, at 05:11, dumbaussie2000 wrote:

>

> You have got MRSA- some form of paralysis coming  diagnosed as MS,

> you've had several positive blood cultures that have by no means

> been dealt with due to dissemination. You basically should be

> sitting in the drivers seat at doctors appointments you can't be

> walking around with the all in your head diagnosis of everyone else.

> You actually need to practise way before your appointment date what

> you need and how to get it.

>

>

>

>

>

>

>

> > >

> > > There's nothing dangerous about doxy for a year

> > > but there is or may be difficulty in getting a

> > doc

> > > to RX it for a year..(see my other email)

> > >

> > > 

> > >

> > >   _____ 

> > >

> > > From: infections

> > >

> > [mailto:infections ]

> > > On Behalf Of dumbaussie2000

> > > Sent: Sunday, May 14, 2006 6:02 PM

> > > infections

> > > Subject: [infections] Re:

> > > Anaphylactic shock, Electrolytes, Salt/C,

> > > Ampehotericine B, Benicar etc.

> > >

> > > 

> > >

> > >

> > > Don't back off the doxy if it is really having a

> > > major impact. Try

> > > add a antifungal since most abx don't agree, I

> > > believe you'll have

> > > less problems with all drugs when your pathogens

> > > are being

> > > quietened.There's nothing dangerous about doing

> > > doxy for a year.

> > > tony

> > >

> > > 

> > >

> > > *      Visit your group

> > > " infections

> > >

> > <InfectionAndInflamm

> > > ation2> " on the web.

> > >  

> > > *     

[Guest guest]

I think the trick is to say that abx /a/f really really helped, and I

want MORE MORE MORE.

On 15 May 2006, at 16:32, dumbaussie2000 wrote:

>

> There is a skill  that you have to develop I know a few that work

> there doctors really well and get everything they need- again the

> alternatives often are uglier than abx so you can play that

> card.Chaemo is something they offer the MS patient not frequently

> though.

> tony

>

>

>

>

>

>

>

> > > >

> > > > There's nothing dangerous about doxy for a

> > year

> > > > but there is or may be difficulty in getting a

> > > doc

> > > > to RX it for a year..(see my other email)

> > > >

> > > > 

> > > >

> > > >   _____ 

> > > >

> > > > From:

> > infections

> > > >

> > >

> > [mailto:infections ]

> > > > On Behalf Of dumbaussie2000

> > > > Sent: Sunday, May 14, 2006 6:02 PM

> > > > infections

> > > > Subject: [infections] Re:

> > > > Anaphylactic shock, Electrolytes, Salt/C,

> > > > Ampehotericine B, Benicar etc.

> > > >

> > > > 

> > > >

> > > >

> > > > Don't back off the doxy if it is really having

> > a

> > > > major impact. Try

> > > > add a antifungal since most abx don't agree, I

> > > > believe you'll have

> > > > less problems with all drugs when your

> > pathogens

> > > > are being

> > > > quietened.There's nothing dangerous about

> > doing

> > > > doxy for a year.

> > > > tony

> > > >

> > > > 

> > > >

> > > > *      Visit your group

> > > > " infections

> > > >

> > >

> > <InfectionAndInflamm

> > > > ation2> " on the web.

> > > >  

> > > > *