Re: Activity-Restore model (PACING)

[Guest guest]

Hi a,

Are you still using NoIRs, I use mine and they take off some of the

pressure.

Action for ME have a Pacing booklet online

http://www.afme.org.uk/news.asp?newsid=72

Designed to be a practical read for people with M.E., the information

booklet explains

how to balance activity and rest to help manage the illness and work

towards recovery.

It gives a step-by-step grounding in the basics of pacing and covers

common questions and stumbling blocks.

I use the pacing technic for every aspect of my life, even for

medication and computer usage.

It makes my aware 'what is making me better' and I try to focus on

getting better.

Even if PAIN can be persistent and hard to ignore.

The PAIN part of me life is existing it's only a fraction.

When I first contacted you and Barb PAI N was my life and I didn't

understand what was happening

and the consekvens.

Today PAIN and tiredness is just tell tales that I'm doing or my system

doing to much.

I sleep/rest after lunch(1 hour) and that reduces pain and tiredness.

When my system is active I need to do less otherwise the controll

system(ENT,NEUR,IS) will

get out of controll and my symptom are back.

When my system is OK I can do more things.

/Per

pjeanneus wrote:

>Per,

>Once again you are describing what I am instinctively feeling. I need

>more rest. The therapy is good but I can sense that something in my

>head is still not right.

>

>I just saw my good MD. She is referring me to a neurologist and has

>ordered MRIs of my head with special focus on my ears. Hopefully,

>nothing bad will show up. She is interested to see if I have brain

>damage that looks like Lyme or MS. I don't know if I am interested or

>not.

>

>I just want the ache and pressure OUT OF MY HEAD.

>

>a

>

>

[Guest guest]

Hello Per,

No, I am not wearing NoIRs. I'm not even taking antibiotics at this

point. This whole nerve damage thing doesn't seem to have anything to

do with Lyme disease in my case. I don't know. I was doing great on

Recuperation for six months, had the throat exam and one tooth worked

on and all you know what broke loose.

I had an MRI today and will see the neurologist next week. This does

not seem to have anything to do with my past cfs, Lyme or even the

quinolone damage.

My hunch is I got a combination candidiasis in my throat and some

virus or bacteria at the same time. Perhaps the scope was

contaminated and not cleaned properly. Nothing else really makes

sense.

a

>

> Hi a,

> Are you still using NoIRs, I use mine and they take off some of the

> pressure.

> Action for ME have a Pacing booklet online

> http://www.afme.org.uk/news.asp?newsid=72

> Designed to be a practical read for people with M.E., the

information

> booklet explains

> how to balance activity and rest to help manage the illness and

work

> towards recovery.

> It gives a step-by-step grounding in the basics of pacing and covers

> common questions and stumbling blocks.

>

> I use the pacing technic for every aspect of my life, even for

> medication and computer usage.

> It makes my aware 'what is making me better' and I try to focus on

> getting better.

> Even if PAIN can be persistent and hard to ignore.

> The PAIN part of me life is existing it's only a fraction.

> When I first contacted you and Barb PAI N was my life and I didn't

> understand what was happening

> and the consekvens.

>

> Today PAIN and tiredness is just tell tales that I'm doing or my

system

> doing to much.

> I sleep/rest after lunch(1 hour) and that reduces pain and

tiredness.

> When my system is active I need to do less otherwise the controll

> system(ENT,NEUR,IS) will

> get out of controll and my symptom are back.

> When my system is OK I can do more things.

> /Per

>

> pjeanneus wrote:

>

> >Per,

> >Once again you are describing what I am instinctively feeling. I

need

> >more rest. The therapy is good but I can sense that something in

my

> >head is still not right.

> >

> >I just saw my good MD. She is referring me to a neurologist and

has

> >ordered MRIs of my head with special focus on my ears. Hopefully,

> >nothing bad will show up. She is interested to see if I have brain

> >damage that looks like Lyme or MS. I don't know if I am interested

or

> >not.

> >

> >I just want the ache and pressure OUT OF MY HEAD.

> >

> >a

> >

> >

>

[Guest guest]

a

A few months back I posted how when you poke you'll find your

infection ain't so invisable. I also asked you to make sure they

REPORT EVERYTHING GROWN IN YOUR SWAB so you can get a better idea of

what you may be dealing with.Now three months later you have no idea

and are finally not touting mycoplasma and lyme (your pet pathogens)

as the cause of all your ills.That swab was such a valuable insight

into all this.It could have been HEAVY GROWTHS STAPH EPI which would

not be reported and as you know ring plenty of bells as far as a

better understanding of what your going thru...Even pseudonomas is

often discarded as a contamination..I mean I just don't understand

why you'd still be trying to guess,(candidyiasis) everything responds

to different treatment.The only help you can get is the right

treatment for the right pathogen at this point.

Put a swab in your ear and get it analysed...

tony

> >

> > >Per,

> > >Once again you are describing what I am instinctively feeling. I

> need

> > >more rest. The therapy is good but I can sense that something in

> my

> > >head is still not right.

> > >

> > >I just saw my good MD. She is referring me to a neurologist and

> has

> > >ordered MRIs of my head with special focus on my ears.

Hopefully,

> > >nothing bad will show up. She is interested to see if I have

brain

> > >damage that looks like Lyme or MS. I don't know if I am

interested

> or

> > >not.

> > >

> > >I just want the ache and pressure OUT OF MY HEAD.

> > >

> > >a

> > >

> > >

> >

>

[Guest guest]

Hello Tony,

I was wondering where you were.

You are clearly not living in Las Vegas. There is no one here who

will test such things as you suggest. It ain't gonna happen.

So you are glad I gave up my pet pathogens. Well, my pet pathogens

are the only pets I know I have. No, I take that back. I have the

stuff Shoemaker tests for. The reason I have given up my two pets is

because the symptoms of this present problem are nothing like

anything I have had in the past except for the sense of brain

swelling.

It did not respond to Augmentin or Zithromax. I am currently taking

lots of garlic. You can tell I am getting desperate.

I guess you will also say that the MRI I just had was a total waste

of time. I will post what the neurologist says, just so you can laugh

at me a bit more.

a <grin>

>

> a

> A few months back I posted how when you poke you'll find your

> infection ain't so invisable. I also asked you to make sure they

> REPORT EVERYTHING GROWN IN YOUR SWAB so you can get a better idea

of

> what you may be dealing with.Now three months later you have no

idea

> and are finally not touting mycoplasma and lyme (your pet

pathogens)

> as the cause of all your ills.That swab was such a valuable insight

> into all this.It could have been HEAVY GROWTHS STAPH EPI which

would

> not be reported and as you know ring plenty of bells as far as a

> better understanding of what your going thru...Even pseudonomas is

> often discarded as a contamination..I mean I just don't understand

> why you'd still be trying to guess,(candidyiasis) everything

responds

> to different treatment.The only help you can get is the right

> treatment for the right pathogen at this point.

> Put a swab in your ear and get it analysed...

> tony

>

>

>

>

>

> > >

> > > >Per,

> > > >Once again you are describing what I am instinctively feeling.

I

> > need

> > > >more rest. The therapy is good but I can sense that something

in

> > my

> > > >head is still not right.

> > > >

> > > >I just saw my good MD. She is referring me to a neurologist

and

> > has

> > > >ordered MRIs of my head with special focus on my ears.

> Hopefully,

> > > >nothing bad will show up. She is interested to see if I have

> brain

> > > >damage that looks like Lyme or MS. I don't know if I am

> interested

> > or

> > > >not.

> > > >

> > > >I just want the ache and pressure OUT OF MY HEAD.

> > > >

> > > >a

> > > >

> > > >

> > >

> >

>

[Guest guest]

a

I don't intend to laugh at anything your going thru!!.. You just

achieved a swab that come back with NO REPORTING. It wasn't difficult

to get your doctor to ask the lab what was actually there..we have

had years on forums and you should realise that something was

there,and that someone felt inappropriate to report on it.You also

said your doctor was cool about doing things the way you wanted and

would give you a script for whatever you thought appropriate.. if I

recall correctly..

Our passionless enthusiasm for neurologists ain't no fault of our own-

as time and time again they never, ever now what's wrong and most of

all never, ever list a problem/s as caused by INFECTION.YET!!! they

are amazed when my friend from san fran seems to kick all her

diagnosed neurological problems with antibiotics.The next problem is

they won't give her a script, so she needs to go back to her LLMD to

get help.

tony

> > > >

> > > > >Per,

> > > > >Once again you are describing what I am instinctively

feeling.

> I

> > > need

> > > > >more rest. The therapy is good but I can sense that

something

> in

> > > my

> > > > >head is still not right.

> > > > >

> > > > >I just saw my good MD. She is referring me to a neurologist

> and

> > > has

> > > > >ordered MRIs of my head with special focus on my ears.

> > Hopefully,

> > > > >nothing bad will show up. She is interested to see if I have

> > brain

> > > > >damage that looks like Lyme or MS. I don't know if I am

> > interested

> > > or

> > > > >not.

> > > > >

> > > > >I just want the ache and pressure OUT OF MY HEAD.

> > > > >

> > > > >a

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Tony,

Are you saying that because a throat swab was sent to a lab that they

tested for infections, got a positive and DIDN'T REPORT IT?????

What am I missing here? I'm no biologist, but I assumed they only

test for 2 or 3 bugs, I didn't have those, so the test was negative.

This is not like they actually looked through a microscope and saw

bacteria, is it?

I remember many years ago my gynecologist kept getting negative tests

on me when I was clearly infected with something. He finally looked

in a microscope himself and still didn't see anything.

So I don't get what you are telling me. They haven't looked, and they

aren't going to. What am I missing????

As to neurologists, I tend to agree, but my son got a tentative Lyme

diagosis when he had a brain scan. The neurologist said he had areas

in his brain THAT LOOKED LIKE LYME. You never know, in the least

likely places, intelligent life may be found.

Thanks,

a

>

> a

> I don't intend to laugh at anything your going thru!!.. You just

> achieved a swab that come back with NO REPORTING. It wasn't

difficult

> to get your doctor to ask the lab what was actually there..we have

> had years on forums and you should realise that something was

> there,and that someone felt inappropriate to report on it.You also

> said your doctor was cool about doing things the way you wanted and

> would give you a script for whatever you thought appropriate.. if I

> recall correctly..

> Our passionless enthusiasm for neurologists ain't no fault of our

own-

> as time and time again they never, ever now what's wrong and most

of

> all never, ever list a problem/s as caused by INFECTION.YET!!! they

> are amazed when my friend from san fran seems to kick all her

> diagnosed neurological problems with antibiotics.The next problem

is

> they won't give her a script, so she needs to go back to her LLMD

to

> get help.

> tony

>

>

>

>

>

>

>

> > > > >

> > > > > >Per,

> > > > > >Once again you are describing what I am instinctively

> feeling.

> > I

> > > > need

> > > > > >more rest. The therapy is good but I can sense that

> something

> > in

> > > > my

> > > > > >head is still not right.

> > > > > >

> > > > > >I just saw my good MD. She is referring me to a

neurologist

> > and

> > > > has

> > > > > >ordered MRIs of my head with special focus on my ears.

> > > Hopefully,

> > > > > >nothing bad will show up. She is interested to see if I

have

> > > brain

> > > > > >damage that looks like Lyme or MS. I don't know if I am

> > > interested

> > > > or

> > > > > >not.

> > > > > >

> > > > > >I just want the ache and pressure OUT OF MY HEAD.

> > > > > >

> > > > > >a

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

a

What I'm trying to teach you is that labs go into automatic.. when a

throat swab is sent in they look for streptococcus pyogenes. Your

doctor totally controls what he or she wants.. If they ask the lab to

give him/her a report as to what's there, the lab OBLIGES.You got

lost in the missing information path(gap) that exists between labs

and doctors. Lab technicians don't see violently ill patients so they

practise homogenised reporting- that's totally dictated to them

by 'doctors'.

No pathogens detected is a fools diagnosis. Every pharmaceutical

company lists these so called NON PATHOGENS on there literature for

treatments..anyway's this is a topic I've been trying to make people

aware of ad nauseum that doesn't fit what people like to hear...I

don't know what else to say, you obviously want to work out how? and

what? to treat.

tony

> > > > > >

> > > > > > >Per,

> > > > > > >Once again you are describing what I am instinctively

> > feeling.

> > > I

> > > > > need

> > > > > > >more rest. The therapy is good but I can sense that

> > something

> > > in

> > > > > my

> > > > > > >head is still not right.

> > > > > > >

> > > > > > >I just saw my good MD. She is referring me to a

> neurologist

> > > and

> > > > > has

> > > > > > >ordered MRIs of my head with special focus on my ears.

> > > > Hopefully,

> > > > > > >nothing bad will show up. She is interested to see if I

> have

> > > > brain

> > > > > > >damage that looks like Lyme or MS. I don't know if I am

> > > > interested

> > > > > or

> > > > > > >not.

> > > > > > >

> > > > > > >I just want the ache and pressure OUT OF MY HEAD.

> > > > > > >

> > > > > > >a

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

a

They grow bacteria in your sample and someone feels that it's not

reportable. The pharmaceutical companies list this same bacteria in

all there treatment for bone/skin/soft tissue infections as a

pathogen that needs treatment so there's a gap that keeps the patient

in the dark.

tony

> > > > > >

> > > > > > >Per,

> > > > > > >Once again you are describing what I am instinctively

> > feeling.

> > > I

> > > > > need

> > > > > > >more rest. The therapy is good but I can sense that

> > something

> > > in

> > > > > my

> > > > > > >head is still not right.

> > > > > > >

> > > > > > >I just saw my good MD. She is referring me to a

> neurologist

> > > and

> > > > > has

> > > > > > >ordered MRIs of my head with special focus on my ears.

> > > > Hopefully,

> > > > > > >nothing bad will show up. She is interested to see if I

> have

> > > > brain

> > > > > > >damage that looks like Lyme or MS. I don't know if I am

> > > > interested

> > > > > or

> > > > > > >not.

> > > > > > >

> > > > > > >I just want the ache and pressure OUT OF MY HEAD.

> > > > > > >

> > > > > > >a

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

---a,

Interesting. Dental work upsets everything. My theory is that the

gums,teeth,jaw are central- fix that and simple things like Blasi's

Recuperation, sunshine (Vit D), etc will work wonders and we wont

need 101 supplements to keep us going.

You can see my other posts on dental issues here and at lymenet.

We need a good dentist just taking 101 things is a losing battle.

Why does Recuperation help? www.alfredblaisi.net explains how in my

view, better than anyone else.

Dr Klinghardt buys into this theory to some extent as well on the

dentist.

Wallace

In infections , " pjeanneus " <pj7@...>

wrote:

>

> Tony,

>

> Are you saying that because a throat swab was sent to a lab that

they

> tested for infections, got a positive and DIDN'T REPORT IT?????

>

> What am I missing here? I'm no biologist, but I assumed they only

> test for 2 or 3 bugs, I didn't have those, so the test was

negative.

> This is not like they actually looked through a microscope and saw

> bacteria, is it?

>

> I remember many years ago my gynecologist kept getting negative

tests

> on me when I was clearly infected with something. He finally looked

> in a microscope himself and still didn't see anything.

>

> So I don't get what you are telling me. They haven't looked, and

they

> aren't going to. What am I missing????

>

> As to neurologists, I tend to agree, but my son got a tentative

Lyme

> diagosis when he had a brain scan. The neurologist said he had

areas

> in his brain THAT LOOKED LIKE LYME. You never know, in the least

> likely places, intelligent life may be found.

>

> Thanks,

> a

>

>

> >

> > a

> > I don't intend to laugh at anything your going thru!!.. You just

> > achieved a swab that come back with NO REPORTING. It wasn't

> difficult

> > to get your doctor to ask the lab what was actually there..we

have

> > had years on forums and you should realise that something was

> > there,and that someone felt inappropriate to report on it.You

also

> > said your doctor was cool about doing things the way you wanted

and

> > would give you a script for whatever you thought appropriate.. if

I

> > recall correctly..

> > Our passionless enthusiasm for neurologists ain't no fault of our

> own-

> > as time and time again they never, ever now what's wrong and

most

> of

> > all never, ever list a problem/s as caused by INFECTION.YET!!!

they

> > are amazed when my friend from san fran seems to kick all her

> > diagnosed neurological problems with antibiotics.The next problem

> is

> > they won't give her a script, so she needs to go back to her LLMD

> to

> > get help.

> > tony

> >

> >

> >

> >

> >

> >

> >

> > > > > >

> > > > > > >Per,

> > > > > > >Once again you are describing what I am instinctively

> > feeling.

> > > I

> > > > > need

> > > > > > >more rest. The therapy is good but I can sense that

> > something

> > > in

> > > > > my

> > > > > > >head is still not right.

> > > > > > >

> > > > > > >I just saw my good MD. She is referring me to a

> neurologist

> > > and

> > > > > has

> > > > > > >ordered MRIs of my head with special focus on my ears.

> > > > Hopefully,

> > > > > > >nothing bad will show up. She is interested to see if I

> have

> > > > brain

> > > > > > >damage that looks like Lyme or MS. I don't know if I am

> > > > interested

> > > > > or

> > > > > > >not.

> > > > > > >

> > > > > > >I just want the ache and pressure OUT OF MY HEAD.

> > > > > > >

> > > > > > >a

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>