Re: Some Recent Accomplishments

[Guest guest]

good luck with it all

bleu

> Good morning, I & I,

>

> I wanted to let the group know that there have been recent

> accomplishments which may clear the way for better progress in the

> near future.

>

> Here's a schedule of current appointments:

>

> Lumbar Puncture Completed: May 23

> ER visit with massive clonus, diazepam prescribed: May 25

> Evoked Potentials at UCSF: May 31

> New PCP 1st meeting: June 3

> Pain Clinic Counseling: June 6

> Nuclear Brain Scan: June 7

> Consult with 2nd Lyme specialist: June 30

>

> Sometime in that month of activity there will be PICC insertion and

> IV antibiotic treatment will begin. The prescription has gone to a

> local company that provides infusion services. They will issue a

> Treatment Authorization Request (TAR) which we expect to be

> approved.

>

> Once approval is given they will assist with arrangements for PICC

> insertion and then make weekly nursing visits to inspect line and

> make sure I'm doing ok with it.

>

> There will also be a follow-up with neurologist at some point, that

> should be scheduled next week.

>

> All tracking of these things and negotiations with MediCal HMO have

> been delegated to family members, since I cannot manage any longer.

> Of course, things fall through the cracks, and yesterday I came home

> from an accupuncture appointment with 7 urgent sounding phone

> messages. But it turned out I could ignore each and everyone one,

> someone else had already taken action on my behalf.

>

> For the first time, everything does not rest on my shoulders. Hard

> to put in words what that means to me.

>

> The new PCP is a singular victory - a compromise solution reached

> with my MediCal HMO, who agreed to brief him in advance of our first

> appointment, and advise him that urgent procedures were needed. He

> hasn't seen me yet, but has already signed off on a very expensive

> nuclear medicine scan of my brain to be performed by the center Dr.

> Stricker uses in San Francisco.

>

> So yeah, I'm very sick and afraid of dying. But my story is not just

> a 'downer', it is also a testament to how much can be done even in

> really difficult circumstances.

>

> My determination to survive this illness has never been stronger.

> Whether I do or not, I am proud of what has been accomplished and

> supremely grateful to all the people in my local and internet life

> who have helped me make it to this stage. That includes the members

> of this list.

>

> Thank you.

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Nice goin man. I'm glad things are gellin. Ive been incommunicando...

moving. Will be back soon. I'm doing well.

<compucruz@y...> wrote:

> Good morning, I & I,

[Guest guest]

I'm so glad to hear your progress report . I was really

concerned after your last email, and didn't quite know how to

respond, as I understand how one can feel so despondent, but

at the same time, I know I cannot begin to comprehend the pain

and suffering you're going through.

I'm also happy to hear that your HMO and doctors seem to finally

be taking things seriously, and are finally stepping up to the

plate. Sheesh, I was about to recommend some sort of " free "

legal help to spur them to action.

I could definitely relate to your statement, " For the first time,

everything does not rest on my shoulders. Hard

> to put in words what that means to me. "

Living alone, with family calling or emailing maybe once or twice

a month, having to beg for $ help every month just to barely get

by, etc., etc., -- that one rang a loud bell. Not sure how it will

happen, but I'm hoping at some point within the next 2-3 months,

that I can say the same thing. Being the " proactive " one, when

one is barely " active " , is a burden none of us should have, and

one which definitely inhibits our recovery.

Looking forward to hearing more good news,

Dan

> Good morning, I & I,

>

> I wanted to let the group know that there have been recent

> accomplishments which may clear the way for better progress

in the

> near future.

>

> Here's a schedule of current appointments:

>

> Lumbar Puncture Completed: May 23

> ER visit with massive clonus, diazepam prescribed: May 25

> Evoked Potentials at UCSF: May 31

> New PCP 1st meeting: June 3

> Pain Clinic Counseling: June 6

> Nuclear Brain Scan: June 7

> Consult with 2nd Lyme specialist: June 30

>

> Sometime in that month of activity there will be PICC insertion

and

> IV antibiotic treatment will begin. The prescription has gone to

a

> local company that provides infusion services. They will issue

a

> Treatment Authorization Request (TAR) which we expect to be

> approved.

>

> Once approval is given they will assist with arrangements for

PICC

> insertion and then make weekly nursing visits to inspect line

and

> make sure I'm doing ok with it.

>

> There will also be a follow-up with neurologist at some point,

that

> should be scheduled next week.

>

> All tracking of these things and negotiations with MediCal HMO

have

> been delegated to family members, since I cannot manage

any longer.

> Of course, things fall through the cracks, and yesterday I came

home

> from an accupuncture appointment with 7 urgent sounding

phone

> messages. But it turned out I could ignore each and everyone

one,

> someone else had already taken action on my behalf.

>

> For the first time, everything does not rest on my shoulders.

Hard

> to put in words what that means to me.

>

> The new PCP is a singular victory - a compromise solution

reached

> with my MediCal HMO, who agreed to brief him in advance of

our first

> appointment, and advise him that urgent procedures were

needed. He

> hasn't seen me yet, but has already signed off on a very

expensive

> nuclear medicine scan of my brain to be performed by the

center Dr.

> Stricker uses in San Francisco.

>

> So yeah, I'm very sick and afraid of dying. But my story is not

just

> a 'downer', it is also a testament to how much can be done

even in

> really difficult circumstances.

>

> My determination to survive this illness has never been

stronger.

> Whether I do or not, I am proud of what has been

accomplished and

> supremely grateful to all the people in my local and internet life

> who have helped me make it to this stage. That includes the

members

> of this list.

>

> Thank you.

>

>

[Guest guest]

Go

This all sounds awesome. I would advise though you request that they

query your path reports and don't assume any finding is irrelevant.

good luck

tony

> Good morning, I & I,

>

> I wanted to let the group know that there have been recent

> accomplishments which may clear the way for better progress in the

> near future.

>

> Here's a schedule of current appointments:

>

> Lumbar Puncture Completed: May 23

> ER visit with massive clonus, diazepam prescribed: May 25

> Evoked Potentials at UCSF: May 31

> New PCP 1st meeting: June 3

> Pain Clinic Counseling: June 6

> Nuclear Brain Scan: June 7

> Consult with 2nd Lyme specialist: June 30

>

> Sometime in that month of activity there will be PICC insertion

and

> IV antibiotic treatment will begin. The prescription has gone to a

> local company that provides infusion services. They will issue a

> Treatment Authorization Request (TAR) which we expect to be

> approved.

>

> Once approval is given they will assist with arrangements for PICC

> insertion and then make weekly nursing visits to inspect line and

> make sure I'm doing ok with it.

>

> There will also be a follow-up with neurologist at some point,

that

> should be scheduled next week.

>

> All tracking of these things and negotiations with MediCal HMO

have

> been delegated to family members, since I cannot manage any

longer.

> Of course, things fall through the cracks, and yesterday I came

home

> from an accupuncture appointment with 7 urgent sounding phone

> messages. But it turned out I could ignore each and everyone one,

> someone else had already taken action on my behalf.

>

> For the first time, everything does not rest on my shoulders. Hard

> to put in words what that means to me.

>

> The new PCP is a singular victory - a compromise solution reached

> with my MediCal HMO, who agreed to brief him in advance of our

first

> appointment, and advise him that urgent procedures were needed. He

> hasn't seen me yet, but has already signed off on a very expensive

> nuclear medicine scan of my brain to be performed by the center

Dr.

> Stricker uses in San Francisco.

>

> So yeah, I'm very sick and afraid of dying. But my story is not

just

> a 'downer', it is also a testament to how much can be done even in

> really difficult circumstances.

>

> My determination to survive this illness has never been stronger.

> Whether I do or not, I am proud of what has been accomplished and

> supremely grateful to all the people in my local and internet life

> who have helped me make it to this stage. That includes the

members

> of this list.

>

> Thank you.

>

>

[Guest guest]

Good for you !!!! Sounds like some major progress and hope that

you have success. One thing that we all seem to have in common is a

will to live and we are willing to fight, and fight hard. You've

been through a lot lately and it is good to hear some encouraging

news, even if it is in the form of more tests and treatments. I'll

look forward to hearing about your forward progress that I know is

just around the next corner:}

> Good morning, I & I,

>

> I wanted to let the group know that there have been recent

> accomplishments which may clear the way for better progress in the

> near future.

>

> Here's a schedule of current appointments:

>

> Lumbar Puncture Completed: May 23

> ER visit with massive clonus, diazepam prescribed: May 25

> Evoked Potentials at UCSF: May 31

> New PCP 1st meeting: June 3

> Pain Clinic Counseling: June 6

> Nuclear Brain Scan: June 7

> Consult with 2nd Lyme specialist: June 30

>

> Sometime in that month of activity there will be PICC insertion

and

> IV antibiotic treatment will begin. The prescription has gone to a

> local company that provides infusion services. They will issue a

> Treatment Authorization Request (TAR) which we expect to be

> approved.

>

> Once approval is given they will assist with arrangements for PICC

> insertion and then make weekly nursing visits to inspect line and

> make sure I'm doing ok with it.

>

> There will also be a follow-up with neurologist at some point,

that

> should be scheduled next week.

>

> All tracking of these things and negotiations with MediCal HMO

have

> been delegated to family members, since I cannot manage any

longer.

> Of course, things fall through the cracks, and yesterday I came

home

> from an accupuncture appointment with 7 urgent sounding phone

> messages. But it turned out I could ignore each and everyone one,

> someone else had already taken action on my behalf.

>

> For the first time, everything does not rest on my shoulders. Hard

> to put in words what that means to me.

>

> The new PCP is a singular victory - a compromise solution reached

> with my MediCal HMO, who agreed to brief him in advance of our

first

> appointment, and advise him that urgent procedures were needed. He

> hasn't seen me yet, but has already signed off on a very expensive

> nuclear medicine scan of my brain to be performed by the center

Dr.

> Stricker uses in San Francisco.

>

> So yeah, I'm very sick and afraid of dying. But my story is not

just

> a 'downer', it is also a testament to how much can be done even in

> really difficult circumstances.

>

> My determination to survive this illness has never been stronger.

> Whether I do or not, I am proud of what has been accomplished and

> supremely grateful to all the people in my local and internet life

> who have helped me make it to this stage. That includes the

members

> of this list.

>

> Thank you.

>

>

[Guest guest]

Yes, scha!

It sounds as though your hard work is finally getting the response

you need, (though it is criminal to my mind that it has taken this

long). While the traveling and testing will no doubt be grueling,

your schedule reads like a battle plan. All in all, you appear ready

to stage a major advance.

And that is nothing but good.

We may get to the point of renaming you General Schaa. Sound good?

Love and Blessings,

Jess

> > Good morning, I & I,

> >

> > I wanted to let the group know that there have been recent

> > accomplishments which may clear the way for better progress in

the

> > near future.

> >

> > Here's a schedule of current appointments:

> >

> > Lumbar Puncture Completed: May 23

> > ER visit with massive clonus, diazepam prescribed: May 25

> > Evoked Potentials at UCSF: May 31

> > New PCP 1st meeting: June 3

> > Pain Clinic Counseling: June 6

> > Nuclear Brain Scan: June 7

> > Consult with 2nd Lyme specialist: June 30

> >

> > Sometime in that month of activity there will be PICC insertion

> and

> > IV antibiotic treatment will begin. The prescription has gone to

a

> > local company that provides infusion services. They will issue a

> > Treatment Authorization Request (TAR) which we expect to be

> > approved.

> >

> > Once approval is given they will assist with arrangements for

PICC

> > insertion and then make weekly nursing visits to inspect line and

> > make sure I'm doing ok with it.

> >

> > There will also be a follow-up with neurologist at some point,

> that

> > should be scheduled next week.

> >

> > All tracking of these things and negotiations with MediCal HMO

> have

> > been delegated to family members, since I cannot manage any

> longer.

> > Of course, things fall through the cracks, and yesterday I came

> home

> > from an accupuncture appointment with 7 urgent sounding phone

> > messages. But it turned out I could ignore each and everyone one,

> > someone else had already taken action on my behalf.

> >

> > For the first time, everything does not rest on my shoulders.

Hard

> > to put in words what that means to me.

> >

> > The new PCP is a singular victory - a compromise solution reached

> > with my MediCal HMO, who agreed to brief him in advance of our

> first

> > appointment, and advise him that urgent procedures were needed.

He

> > hasn't seen me yet, but has already signed off on a very

expensive

> > nuclear medicine scan of my brain to be performed by the center

> Dr.

> > Stricker uses in San Francisco.

> >

> > So yeah, I'm very sick and afraid of dying. But my story is not

> just

> > a 'downer', it is also a testament to how much can be done even

in

> > really difficult circumstances.

> >

> > My determination to survive this illness has never been stronger.

> > Whether I do or not, I am proud of what has been accomplished and

> > supremely grateful to all the people in my local and internet

life

> > who have helped me make it to this stage. That includes the

> members

> > of this list.

> >

> > Thank you.

> >

> >

[Guest guest]

:

Looks like a plan!

We all understand what a rollercoaster ride this is..

Good luck, and keep us posted.

Barb

> Good morning, I & I,

>

> I wanted to let the group know that there have been recent

> accomplishments which may clear the way for better progress in the

> near future.

>

> Here's a schedule of current appointments:

>

> Lumbar Puncture Completed: May 23

> ER visit with massive clonus, diazepam prescribed: May 25

> Evoked Potentials at UCSF: May 31

> New PCP 1st meeting: June 3

> Pain Clinic Counseling: June 6

> Nuclear Brain Scan: June 7

> Consult with 2nd Lyme specialist: June 30

>

> Sometime in that month of activity there will be PICC insertion and

> IV antibiotic treatment will begin. The prescription has gone to a

> local company that provides infusion services. They will issue a

> Treatment Authorization Request (TAR) which we expect to be

> approved.

>

> Once approval is given they will assist with arrangements for PICC

> insertion and then make weekly nursing visits to inspect line and

> make sure I'm doing ok with it.

>

> There will also be a follow-up with neurologist at some point, that

> should be scheduled next week.

>

> All tracking of these things and negotiations with MediCal HMO have

> been delegated to family members, since I cannot manage any longer.

> Of course, things fall through the cracks, and yesterday I came

home

> from an accupuncture appointment with 7 urgent sounding phone

> messages. But it turned out I could ignore each and everyone one,

> someone else had already taken action on my behalf.

>

> For the first time, everything does not rest on my shoulders. Hard

> to put in words what that means to me.

>

> The new PCP is a singular victory - a compromise solution reached

> with my MediCal HMO, who agreed to brief him in advance of our

first

> appointment, and advise him that urgent procedures were needed. He

> hasn't seen me yet, but has already signed off on a very expensive

> nuclear medicine scan of my brain to be performed by the center Dr.

> Stricker uses in San Francisco.

>

> So yeah, I'm very sick and afraid of dying. But my story is not

just

> a 'downer', it is also a testament to how much can be done even in

> really difficult circumstances.

>

> My determination to survive this illness has never been stronger.

> Whether I do or not, I am proud of what has been accomplished and

> supremely grateful to all the people in my local and internet life

> who have helped me make it to this stage. That includes the members

> of this list.

>

> Thank you.

>

>